tag:blogger.com,1999:blog-3803004958006214052024-03-13T22:38:44.762-07:00Rebecca's BrainAnonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.comBlogger38125tag:blogger.com,1999:blog-380300495800621405.post-54986403965897432502012-06-22T17:02:00.000-07:002012-06-22T17:02:22.204-07:00Another setback<div dir="ltr" style="text-align: left;" trbidi="on">
We thought I was doing pretty well but this week has seen a major setback. At the beginning of the week, my emotional health got hit hard from someone I know and I spent most of the day crying. After that, I developed a huge headache. We thought it was from the increased pressure from blowing my nose and crying a lot but it hasn't gone away. The vomiting followed closely behind and now I have full body aches and pains and a lot of dizziness. In the past four days, I haven't been able to sit up for more than a few minutes, eat well, or eve walk very far. Today, I started running a low grade fever. If it doesn't get better in the next day or so I am going to have to go to the hospital. I am hoping it's just some kind of weird summer virus I picked up. I feel like I've lost an entire week, though, and that makes me so sad. We did so well last week and over the weekend. Now, I feel like I am back to square one. Nothing has helped the pain in my head and it's like pressure and stabbing pain I have never experienced before. Irnnically, some people have the surgery to help alleviate this. I didn't have it at all before the surgery. I don't know what's going on. </div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com1tag:blogger.com,1999:blog-380300495800621405.post-89286100218496729172012-06-15T06:27:00.004-07:002012-06-15T06:27:42.156-07:00Day 18<div dir="ltr" style="text-align: left;" trbidi="on">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Little by little, some of the post-op symptoms are starting to disappear. The nausea and vomiting have all but stopped, except for the occasional flare ups. I don't feel as tired all the time, either, and that's a good thing. Although I have to stay flat for pain management, I can sit up throughout the day and I don't feel the constant urge to sleep.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Yesterday, we got out and looked at a house and then went out to supper. When we got back, I sat out on the front porch swing with Iris for a little bit and then stayed up and watched a scary movie with Sam. The whole day was totally exhausting and made the pressure a little worse, but it was totally worth it and NOT something I could have done a few days ago or maybe even a month ago.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">The feeling of pressure is still unbearable at times but that's the worst of the post-op symptoms. My neck still feels a little stiff but I can move it fine, as long as I remember not to move it too quickly. </span></div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com0tag:blogger.com,1999:blog-380300495800621405.post-45326268322044973132012-06-13T18:43:00.001-07:002012-06-13T18:43:08.706-07:002 Week Follow Up<div dir="ltr" style="text-align: left;" trbidi="on">
Today we trekked back to the NS for my 2 week follow up appointment. It went better than expected, although traveling anywhere after brain surgery kind of takes the fun out of a car trip.<br />
<br />
The NS and his nurse seemed to be sympathetic about my pain, although the NS did remark to his nurse that he had "never seen anything like this with THIS kind of surgery." I WOULD have to be the anomaly.<br />
<br />
His general idea is that, along with nerve damage in my head, some tendons and other things might have gotten damaged which is causing the sharp, shooting pain. He gave me some nerve blockers for it there in the office. It did numb that pain but did nothing for the pressure. Because the pressure is only on one side of my head, it confuses him. The fluid build-up, of course, might just be on the one side and that could account for that. Without a CT scan or MRI it's hard to tell.<br />
<br />
In the meantime, I am getting more pain management (thank God) and am supposed to call back in six days if things don't change.<br />
<br />
So, not a lot of news. Just more "wait and see." Still, he was very nice and listened to me and took me seriously. I just want to reiterate that I have not had ANY issues with the neurosurgeon himself. I have found him well-informed, interesting, and I like the fact that he takes his time with me. The lack of communication between the support workers, however, is borderline crazy. Even during the visit today things were getting lost in translation. For instance, he told me to call back in 6 days yet, when we were leaving, the nurse told me 2 weeks.<br />
<br />
I will continue resting, drinking fluids, and taking the pain medication when needed. Hopefully, things will start to get better and I will have some respite until they have to do something else. </div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com0tag:blogger.com,1999:blog-380300495800621405.post-49512518108202946302012-06-11T22:19:00.001-07:002012-06-11T22:19:09.559-07:00pseudo tumor cerebri<div dir="ltr" style="text-align: left;" trbidi="on">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">On Wednesday I will be going back to the neurosurgeon. At that time, we will discuss whether a pseudo tumor cerebri is causing my post-op problems. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">The pseudo tumor cerebri is common post-op when it comes to a Chiari decompression, although people can develop it beforehand, too. It's not limited to Chiari patients. So what is it?</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Much like the name implies, a pseudo tumor cerebri is a mass that acts like a tumor but isn't one. It happens when the pressure inside of your head builds up. This can be caused by many factors, but post-op can be due to a CSF leak. The symptoms that are present are similar to those that you would find with a brain tumor. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">According to the Mayo Clinic's website, symptoms include:</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><br />
<br />
<div style="font-family: Georgia, 'Times New Roman', serif; line-height: 1.5em; margin-bottom: 20px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;">
<br /></div>
<ul style="font-family: Georgia, 'Times New Roman', serif; list-style-image: initial; list-style-position: initial; list-style-type: none; margin-bottom: 20px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 25px; padding-right: 0px; padding-top: 0px;">
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-origin: initial; background-position: 0px 7px; line-height: 1.5em; margin-bottom: 10px; margin-left: 0px; margin-right: 0px; margin-top: 0px; min-width: 0px; padding-left: 13px;">Moderate to severe headaches that may originate behind your eyes, wake you from sleep and worsen with eye movement</li>
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-origin: initial; background-position: 0px 7px; line-height: 1.5em; margin-bottom: 10px; margin-left: 0px; margin-right: 0px; margin-top: 0px; min-width: 0px; padding-left: 13px;">Ringing in the ears that pulses in time with your heartbeat</li>
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-origin: initial; background-position: 0px 7px; line-height: 1.5em; margin-bottom: 10px; margin-left: 0px; margin-right: 0px; margin-top: 0px; min-width: 0px; padding-left: 13px;">Nausea, vomiting or dizziness</li>
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-origin: initial; background-position: 0px 7px; line-height: 1.5em; margin-bottom: 10px; margin-left: 0px; margin-right: 0px; margin-top: 0px; min-width: 0px; padding-left: 13px;">Blurred or dimmed vision</li>
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-origin: initial; background-position: 0px 7px; line-height: 1.5em; margin-bottom: 10px; margin-left: 0px; margin-right: 0px; margin-top: 0px; min-width: 0px; padding-left: 13px;">Brief episodes of blindness, lasting only a few seconds and affecting one or both eyes (visual obscurations)</li>
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-origin: initial; background-position: 0px 7px; line-height: 1.5em; margin-bottom: 10px; margin-left: 0px; margin-right: 0px; margin-top: 0px; min-width: 0px; padding-left: 13px;">Difficulty seeing to the side</li>
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-origin: initial; background-position: 0px 7px; line-height: 1.5em; margin-bottom: 10px; margin-left: 0px; margin-right: 0px; margin-top: 0px; min-width: 0px; padding-left: 13px;">Double vision (diplopia)</li>
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-origin: initial; background-position: 0px 7px; line-height: 1.5em; margin-bottom: 10px; margin-left: 0px; margin-right: 0px; margin-top: 0px; min-width: 0px; padding-left: 13px;">Seeing light flashes (photopsia)</li>
<li style="background-attachment: initial; background-clip: initial; background-color: initial; background-origin: initial; background-position: 0px 7px; line-height: 1.5em; margin-bottom: 10px; margin-left: 0px; margin-right: 0px; margin-top: 0px; min-width: 0px; padding-left: 13px;">Neck, shoulder or back pain</li>
</ul>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<span class="Apple-style-span" style="line-height: 24px;">On the Chiari and Synringomleia site, they talk about PTC.</span></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<span class="Apple-style-span" style="line-height: 24px;"><span class="Apple-style-span" style="line-height: normal;"><a href="http://www.csfinfo.org/node/184">http://www.csfinfo.org/node/184</a>)</span></span></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<span class="Apple-style-span" style="line-height: 24px;"><span class="Apple-style-span" style="line-height: normal;"><br /></span></span></div>
<div>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="line-height: 24px;"><span class="Apple-style-span" style="line-height: normal;">For treatment, it states that " </span></span><span class="Apple-style-span" style="line-height: 16px;">In one retrospective review, it is claimed that up to 41.6% of failed Chiari patients may be diagnosed with pseudotumor cerebri syndrome.<sup>4</sup> If there is adequate decompression as noted on MRI, then a lumbar puncture may be used to measure opening pressures, and also to perform diagnostic and therapeutic CSF drainage to determine whether drainage improves symptoms. Both ventriculoperitoneal and lumboperitoneal shunts are options in patients who show symptomatic relief from the diagnostic lumbar puncture and CSF drainage in this setting."</span></span></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<span class="Apple-style-span" style="line-height: 24px;"><br /></span></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<span class="Apple-style-span" style="line-height: 24px;">This is a possibility for me since in the past two days I have now picked up neck and shoulder pain that is getting increasingly worse. It is possible to have both a PTC as well as a CSF leak so both of these need to be ruled out on Wednesday. </span></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<span class="Apple-style-span" style="line-height: 24px;"><br /></span></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<span class="Apple-style-span" style="line-height: 24px;">Medications can be used to help lessen the symptoms, but in most cases another surgery must be performed to get any relief. Normally, a shunt would be placed in order to help drain the fluid that is causing the build-up and the pressure. If there is a CSF leak, then a blood patch can be applied to stop the leak. If the dura patch is being rejected, then a new surgery might be performed altogether with a new kind of patch. </span></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<span class="Apple-style-span" style="line-height: 24px;"><br /></span></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<span class="Apple-style-span" style="line-height: 24px;">A PTC might not be seen on a MRI unless it is very large. Instead, a lumbar puncture (LP) might need to be used. These can be dangerous for Chiari patients so don't go running off to your ER if you have pressure. It's important to talk to your NS first who can help you determine if there is any danger to having the LP. </span></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<span class="Apple-style-span" style="line-height: 24px;"><br /></span></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<span class="Apple-style-span" style="line-height: 24px;">So really, we don't know where I am at as of yet. I am probably going to need an additional surgery but hopefully it will be a small outpatient one that just requires a simple blood patch to stop the leak. Of course, with the EDS it's a possibility that the dura is not working the way it should, either, and that is an entirely new problem altogether and would require the decompression to be repeated. </span></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<span class="Apple-style-span" style="line-height: 24px;"><br /></span></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<span class="Apple-style-span" style="line-height: 24px;"><br /></span></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<span class="Apple-style-span" style="line-height: 24px;"><b>Links to info about PTC:</b></span></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<span class="Apple-style-span" style="line-height: 24px;"><b><br /></b></span></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<span class="Apple-style-span" style="line-height: 24px;"><a href="http://www.chiariconnectioninternational.com/ptc.php">http://www.chiariconnectioninternational.com/ptc.php</a></span></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<a href="http://chiarione.org/chiari.html">http://chiarione.org/chiari.html</a></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<a href="http://www.ncbi.nlm.nih.gov/pubmed/16357496">http://www.ncbi.nlm.nih.gov/pubmed/16357496</a></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<a href="http://www.csfinfo.org/node/184">http://www.csfinfo.org/node/184</a></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<a href="http://emedicine.medscape.com/article/1143167-overview">http://emedicine.medscape.com/article/1143167-overview</a></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<a href="http://www.ninds.nih.gov/disorders/pseudotumorcerebri/pseudotumorcerebri.htm">http://www.ninds.nih.gov/disorders/pseudotumorcerebri/pseudotumorcerebri.htm</a></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<a href="http://www.medicinenet.com/pseudotumor_cerebri/article.htm">http://www.medicinenet.com/pseudotumor_cerebri/article.htm</a></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<br /></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<br /></div>
<div style="font-family: Georgia, 'Times New Roman', serif;">
<span class="Apple-style-span" style="line-height: 24px;"><br /></span></div>
</div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com0tag:blogger.com,1999:blog-380300495800621405.post-28058771322432653942012-06-10T19:55:00.001-07:002012-06-10T19:55:40.913-07:00Day 13<div dir="ltr" style="text-align: left;" trbidi="on">
I had a visitor today and that was nice. She brought me homemade brownies.<br />
<br />
The pain took another turn for the worse and now I have this awful stiffness in my neck as well. I swear, it feels like my head is going to explode. The pressure is constant and where it was limited to the left side of my head, now it is spreading over the right. The stiffness and pain on the left side of my neck is radiating down my left arm, too. Pete can massage it and it helps a little bit. I don't notice that the muscle relaxers do much for it.<br />
<br />
When the pain is at its worse it makes me sweat and the clamminess is not nice. But, it's certainly not the worst thing about this.<br />
<br />
I have lost a little more weight. I think I am averaging about a pound a day. I can eat, but food doesn't have much of a taste and it's hard to get it to go down. After a few bites it doesn't feel like it's worth the effort. Pete made me some lovely eggs last night and they were perfect. Ordinarily I would have eaten all of them and wanted even more.<br />
<br />
I wash my hair about every other day and try to keep air on the wound so that it will heal properly. I do my exercises several times a day, walk around the house, and sit up for a few hours at a time. I am also drinking a lot of juice, including blueberry juice that contains good antioxidants and cranberry juice that can help fight infection. </div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com0tag:blogger.com,1999:blog-380300495800621405.post-87839968394700950622012-06-09T14:08:00.002-07:002012-06-09T14:08:23.885-07:00Day 12<div dir="ltr" style="text-align: left;" trbidi="on">
Today is Saturday, June 9th.<br />
<br />
Thanks to the pain meds my PCP prescribed, I can sort of function through the pain. I am able to shower and move around and not be blinded by the unbearable pressure and stabbing sensation in my head.<br />
<br />
I can hear and feel the fluid when I move my head, which is weird, but I don't know what to do about that. I have to keep taking the pills every 4-6 hours. To get behind or miss a dose means that it takes hours to get it back under control again.<br />
<br />
The thrush is having difficulty clearing up since the steroids make it worse. I have about a day left of them.<br />
<br />
So far, I have lost 15 pounds in 12 days. That is not totally unwelcome. :-)<br />
<br />
I continue to do my exercises for my neck and to move around for flexibility and mobility concerns. There is some tightness, but I think my mobility is actually pretty good.<br />
<br />
When I feel better, I am going to write the hospital advocacy program. I will document the treatment by the nurses (not all of them, of course) and by the unfair treatment that I feel I received from the neurosurgeon's staff. I do not have an issue with the NS at the this time since, so far, everything negative has come from other people. True, they say it's by his orders, but all I have is their word on that.<br />
<br />
If I don't get some kind of satisfactory reply or attention that I might seriously consider contacting the media.<br />
<br />
More and more, I am becoming aware that my treatment was NOT normal or typical and it could have very well been dangerous. Even worse is the fact that due to my poor treatment, I am nervous about doing any kind of follow-up which could be even more hazardous to my health. They have put me in an awkward situation and uncomfortable position that makes me hesitant to seek care that I probably really need.<br />
<br />
In the meantime, I continue to rest and try to eat and drink fluids. </div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com0tag:blogger.com,1999:blog-380300495800621405.post-70968577608743975982012-06-08T06:34:00.002-07:002012-06-08T06:34:31.416-07:00A more unified entry<div dir="ltr" style="text-align: left;" trbidi="on">
I have created a page at the top called "My Surgery Story". You can find it here <a href="http://beckschiari.blogspot.com/p/my-surgery-story_08.html">http://beckschiari.blogspot.com/p/my-surgery-story_08.html</a> This should help you follow along better instead of having to jump around to all my entries. The timeline goes something like this, though:<br />
<br />
<b>Day 1 (29th): Day of the surgery </b><br />
<b><br /></b><br />
7:30AM-surgery<br />
12:00PM- moved to recovery<br />
12-2:00PM- vomiting, walking around<br />
2:00PM- moved to room<br />
- walked for at least 10 minutes every hour until Day 2<br />
- no catheter after surgery<br />
- reported blisters and pain inside of mouth<br />
- nurse did ultrasound and found full bladder that was not emptying completely<br />
<br />
<b>Day 2 (30th): released</b><br />
<b><br /></b><br />
- reported blisters, pain, and grittiness inside of mouth to nurse<br />
- pain medicine sometimes 15 minutes late or more-muscle relaxer nearly 2 hours late<br />
- reported nausea to nurse<br />
- served molded bread in hospital<br />
- reported too large booties that made me slip and nearly fall<br />
- left alone unattended to shower and wash my sutures<br />
- walked 15-20 minutes every hour<br />
1:00-3:00pm- released from hospital<br />
<br />
<b>Day 3 (31st): hotel </b><br />
<br />
a little pain, some nausea, ate okay, rested<br />
<br />
<b>Day 4 (June 1st): hotel </b><br />
<br />
more pain, nausea, vomiting, rest, ate okay<br />
<br />
<b>Day 5 (June 2nd): home</b><br />
<br />
came home, lots of pain, feeling of fluid in back of neck, nausea<br />
<br />
<b>Day 6 (June 3-Sunday): home</b><br />
<br />
build-up of pressure, more vomiting, cold sweats, shooting pain<br />
<br />
<b>Day 7 (June 4-Monday): home</b><br />
<br />
- called NS, prescribed steroids<br />
- visited PCP (went home with scripts for nausea, constipation, and thrush)<br />
- NS nurse told me if steroids don't help then I should come in on Wednesday<br />
- that night, broke out into hives<br />
<br />
<b>Day 8 (June 5-Tuesday):</b><br />
<br />
- called NS<br />
- informed NS of increased pressure and pain and hives<br />
- informed NS that I was almost out of pain medication (1 day left)<br />
- NS did not offer instruction regarding hives<br />
- was told that I could take Tylenol from there on out (7 days complete post-op, 8 days since surgery)<br />
- double vision started<br />
<br />
<b>Day 9 (June 6-Wednesday): home</b><br />
<br />
- NS called at 8:00AM and told me to leave for Cincinnati<br />
- ran off road on drive up<br />
- called NS and asked if we could move the appointment up an hour. nurse would not talk to me.<br />
- receptionist called me back and told me not to come in at all-to wait until following Wednesday<br />
- vomiting and nausea persisted<br />
- horrible pain<br />
- clammy sweats from pain<br />
- double vision<br />
- completely out of all pain meds<br />
<br />
<b>Day 10 (June 7-Thursday): home</b><br />
<br />
- went to PCP and received pain management<br />
- finally able to sleep more than an hour at a time (first since surgery)<br />
- nausea and vomiting improved<br />
<br />
<b>Day 11 (June 11-Friday) : home</b><br />
<br />
- nausea<br />
- burning pain in head<br />
- feeling of fluid "slooshing" when I turn my head<br />
- pressure along one side of head<br />
- pain is worse upon sitting or standing<br />
<br />
*note: all of these symptoms have been passed along to my neurosurgeon's nurse</div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com1tag:blogger.com,1999:blog-380300495800621405.post-27332192916142732322012-06-07T21:09:00.000-07:002012-06-07T21:09:41.082-07:00Week 2 update<div dir="ltr" style="text-align: left;" trbidi="on">
If you're following along...<br />
<br />
<b>Day 6</b><br />
<br />
On Sunday and Monday the pain in my head turned to a very hard pressure and burning sensation. I also started vomiting again. A call to the NS lead to a discussion with the RN who said it was probably swelling in my brain. She called in steroids to my PCP.<br />
<br />
I then went to my PCP who gave me stuff for Zofran and constipation, as well as for the thrush. (This should bring us up-to-date.)<br />
<br />
<b>Day 7</b><br />
<br />
On Monday night, I began breaking out in hives. I'd never had an allergic reaction to medicine before so this was a first. Pete called the NS on Tuesday morning and told them not only was the pain/vomiting/nausea still bad but that I now had hives. They did not return my call.<br />
<br />
Over the course of the day, the pain intensified. I used up the remainder of the pain medication and when, at last, the NS nurse called back we were informed that they would not give me anything else. That people have this surgery all the time and that I would be okay. Needless to say, we were not happy.<br />
<b><br /></b><br />
<b>Day 8</b><br />
<br />
On Wednesday morning, the pain was terrible. At 8:00 am, the nurse called and said that in light of recent events I needed to go to Cincinnati right then and there. (Maybe they read my blog entry?) Now, Pete works third shift in our house AND has a sleeping disorder. He had only gone to bed 2 hours before. Cincy is 5 hours of driving for us. He asked them what they were going to do for me, thinking that we did not want to endanger our lives for Tylenol, and the nurse said she didn't know.<br />
<br />
We had only been on the road for 30 minutes when he fell asleep and drifted off the road. Needless to say, staying on said road was no longer an option. I couldn't possibly drive and neither could he. I called the NS and asked them if we could move the appointment up, if they could talk to my PCP and maybe talk to me through them, or do something else instead.<br />
<br />
Nope.<br />
<br />
Instead, the receptionist called me back and told me not to bother coming in at all-just to come in next week for my regular 2 week follow up.<br />
<br />
Day 8 turnd out to be a blu or pain, vomiting, and loss of consciousness. I have probably been in more pain in my life but I don't know when. I can FEEL the fluid pooling in the back of my neck. It moves. The pain made me break out into clammy sweats. I honestly felt like I was dying at times.<br />
<br />
<b>Day 9</b><br />
<br />
First thing this morning, I went to my PCP. She sorted me out and took pity on me and examined me. We determined that my local university hospital can at least fix a leak with a blood patch, even though they know little about Chiari. She also went to work on finding me a NL and a Rheumy to help with the Ehlos-Danlos front.<br />
<br />
The verdict is, I am going back to Cincy for my follow-up, but will be going to UK for the remainder of my care. It appears that my NS has kind of washed their hands of me. In the meantime, I will continue to drink fluids, stay flat, and monitor myself for a fever. I'll go in for the follow-up next Wednesday but if something gets worse before then I will go to UK. At this point, I am not sure I want Cincy to operate on me again. I am not real satisfied with the level of care I am getting from there and feel like it borders on inhumane.<br />
<br />
My friend Abby sent me some chicken soup via mail and I was able to eat that today. I finished the whole bowl-the first food I have finished in 9 days, and it felt good to eat. I also had some birthday cake with Pete since today was his birthday. Sam made a little party for him with balloons, pizza, and football napkins.<br />
<br />
I did everything they told me to: lost weight, ate an anti-inflammatory diet, cut out caffeines and processed foods, and stopped pain medication 2 weeks prior to surgery. They haven't done much to hold up their end.<br />
<br />
After getting some pain relief today, I was able to nap better and rest. This has helped ease the pressure on my brain which has also helped the nausea and vomiting. </div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com0tag:blogger.com,1999:blog-380300495800621405.post-62387998240985261442012-06-05T21:10:00.000-07:002012-06-13T18:27:42.938-07:00A guide to my surgery<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="separator" style="clear: both; text-align: center;">
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-8TxvQSLG7oA/T87VSnjwgdI/AAAAAAAAIAY/rTbdWDYi6yk/s1600/103_9473.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://4.bp.blogspot.com/-8TxvQSLG7oA/T87VSnjwgdI/AAAAAAAAIAY/rTbdWDYi6yk/s320/103_9473.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">waiting around</td></tr>
</tbody></table>
<br />
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">I would like to go
ahead and post a proper update regarding y surgery while I am at least a little
bit conscious. Although, forgive me, I still have some heavy medications in my
system. We’ll see how much sense this makes!<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><b>Monday night:</b><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">I kissed my babies
goodbye at about 3:00 am. Iris was already asleep but Sam was still awake. He
cried and held onto me as I left and it was very difficult. Mom said that he stood in the window and waved at us as we went down the driveway. I'm glad I didn't see that. Honestly. I didn’t
know if I would ever see him again. He, mom, and Iris would come up later that
day once I got out of recovery and see me. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div style="text-align: left;">
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-gaQ0dItMl0c/T87VUrVo1TI/AAAAAAAAIAg/7EjH1t6L7kU/s1600/103_9474.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://4.bp.blogspot.com/-gaQ0dItMl0c/T87VUrVo1TI/AAAAAAAAIAg/7EjH1t6L7kU/s320/103_9474.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">we got there a little early</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-YRL0ydB549s/T87VXDktdQI/AAAAAAAAIAo/yoe5WzvO--I/s1600/103_9475.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://3.bp.blogspot.com/-YRL0ydB549s/T87VXDktdQI/AAAAAAAAIAo/yoe5WzvO--I/s320/103_9475.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">waiting to go in</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-QJ9AzWfXqXA/T87VZzQt0yI/AAAAAAAAIAw/9TPMgRs-BBA/s1600/103_9479.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-QJ9AzWfXqXA/T87VZzQt0yI/AAAAAAAAIAw/9TPMgRs-BBA/s320/103_9479.JPG" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">one last hairbrush </td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-OQl6jQMiENU/T87VkshV4MI/AAAAAAAAIBQ/ApbCRNsUvWE/s1600/103_9485.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://3.bp.blogspot.com/-OQl6jQMiENU/T87VkshV4MI/AAAAAAAAIBQ/ApbCRNsUvWE/s320/103_9485.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">marking my head</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-9GZ6NRZ3MLE/T87VhCa5P7I/AAAAAAAAIBI/UUfdlQjDYTc/s1600/103_9483+-+Copy.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://3.bp.blogspot.com/-9GZ6NRZ3MLE/T87VhCa5P7I/AAAAAAAAIBI/UUfdlQjDYTc/s320/103_9483+-+Copy.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">apparently they weren't too concerned about this!</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-aOyPys5sjXM/T87VfEMys_I/AAAAAAAAIBA/nbxLRPrsE6w/s1600/103_9481.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://4.bp.blogspot.com/-aOyPys5sjXM/T87VfEMys_I/AAAAAAAAIBA/nbxLRPrsE6w/s320/103_9481.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">booties</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-78Bzlgr-FCs/T87Vxq-cQHI/AAAAAAAAIB4/tDKOHO5eAPA/s1600/103_9492.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://3.bp.blogspot.com/-78Bzlgr-FCs/T87Vxq-cQHI/AAAAAAAAIB4/tDKOHO5eAPA/s320/103_9492.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">moldy bread</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-K9FDktj0ks0/T87VmsmAuhI/AAAAAAAAIBY/1uRRIUY0wqs/s1600/103_9486.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://1.bp.blogspot.com/-K9FDktj0ks0/T87VmsmAuhI/AAAAAAAAIBY/1uRRIUY0wqs/s320/103_9486.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">all needled up</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-VN2rbNWHqVM/T87VqZOSztI/AAAAAAAAIBg/AG5-tVUh4Cg/s1600/103_9487+-+Copy.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://4.bp.blogspot.com/-VN2rbNWHqVM/T87VqZOSztI/AAAAAAAAIBg/AG5-tVUh4Cg/s320/103_9487+-+Copy.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">post op</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-ZO9sKrZcgFE/T87VuX6aKCI/AAAAAAAAIBo/oKw9a2WMRB0/s1600/103_9490+-+Copy.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://3.bp.blogspot.com/-ZO9sKrZcgFE/T87VuX6aKCI/AAAAAAAAIBo/oKw9a2WMRB0/s320/103_9490+-+Copy.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">view from my window</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-8DVTvNKEdY8/T87Vv4Vv-1I/AAAAAAAAIBw/iJ3ZVIHvlG8/s1600/103_9491.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://2.bp.blogspot.com/-8DVTvNKEdY8/T87Vv4Vv-1I/AAAAAAAAIBw/iJ3ZVIHvlG8/s320/103_9491.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">pete's flower</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-sQYpWfoKmO8/T87V0130R2I/AAAAAAAAICE/ox-UFczBnHI/s1600/103_9498.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://1.bp.blogspot.com/-sQYpWfoKmO8/T87V0130R2I/AAAAAAAAICE/ox-UFczBnHI/s320/103_9498.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">day 3</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-zi-5ohNVVUM/T87V3ZQ11YI/AAAAAAAAICM/Bts0SouSNcM/s1600/103_9502.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://3.bp.blogspot.com/-zi-5ohNVVUM/T87V3ZQ11YI/AAAAAAAAICM/Bts0SouSNcM/s320/103_9502.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">the kids went to the museum </td></tr>
</tbody></table>
<br />
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">I thought about
them on the whole drive up to Cincinnati. Pete slept while I drove so it was a
lonely ride but the radio was good. Not being able to eat or drink after
midnight made the driving harder but since I am awake at that time normally
anyway it wasn’t so bad. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><b>Checking in</b><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">We arrived at the
hospital at 500AM. Security let us in but nothing was open yet. We had to hang
around until 530, just kind of sorting through magazines and talking. We are
not morning people so the absurd hour had us a little disjointed. I joked with
the receptionist about how I hoped the NS was more alert than I was. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-54bQSTVCNaU/T87V9LOn3rI/AAAAAAAAICc/SxozwDBZbhI/s1600/103_9537.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://3.bp.blogspot.com/-54bQSTVCNaU/T87V9LOn3rI/AAAAAAAAICc/SxozwDBZbhI/s320/103_9537.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">day 5</td></tr>
</tbody></table>
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">It took a few tries
to get some blood out of me and even more tries to get the IV in but the nurses
were all friendly. I was a little concerned that NOBODY I talked to had ever
heard of Ehlers Danlos Syndrome but figured that it was the after care that
made EDS important so maybe it didn’t matter whether the anesthesiologist knew
about it or not. They kept asking me what EDS was and it I thought it was related to anything else I had. Um, yes it is. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><b>The anesthesiologist</b><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">The ane was a
young, jovial guy whom I quite liked. He laughed a lot and joked and was
caring. He was a little taken aback to hear about my past experiences with anesthesia
(trouble breathing, respiratory arrest, constant vomiting, etc.) I was taken
aback to hear that they I would be wide awake and alert when they moved me into
the OR. That freaks me out. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">We talked at length
about what they could do for me in terms of nausea and vomiting. He said he
would talk to his team and that they would give me things while I was under so
that I wouldn’t wake up sick. I felt comfortable with him. He also said they
might be able to give me something for slight sedation purposes so that I wasn’t
too nervous when I went into the OR. This made me feel a little better, too. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><b>In the OR</b><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">They came in and marked my head with a sharpie as to where they wold be drawing on me and I remember thinking that they were a little rough but then laughing, considering what was coming in store for me. I was awake,
briefly, in the OR but it didn’t last long. The last thing I remember was that
they told me that they would wake me up immediately following the surgery to
ensure that all of my reflexes and faculties were working. I wasn’t looking forward
to being THAT alert upon waking up but at that point I just wanted to get it
over with….They gig me a light sedation so I don't remember the NS coming in. That's a good thing. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-pfnb2PSd9UA/T87WCLV0GWI/AAAAAAAAICs/-8FF68gRp3o/s1600/103_9581.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://4.bp.blogspot.com/-pfnb2PSd9UA/T87WCLV0GWI/AAAAAAAAICs/-8FF68gRp3o/s320/103_9581.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">it is far worse now but even then they should have looked at this and recognized it</td></tr>
</tbody></table>
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><b>Waking up</b><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">Upon waking up, I
was first alert to noise and the pressure on my bladder. I needed to pee so
badly. No kidding, I would have made a racehorse proud. As it turns out, they
had NOT given me a catheter. I quickly asked for a bedpan and they put one
under me. When I tried to raise my hips, however, it felt as though I had a
block of something under my neck. I assumed that I might be on a positioned or
something because moving was sooo awkward. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">I was able to pee
for a few seconds but then it stopped. They asked me where I was and made me
move everything and seemed pretty happy with my responses. But then the
vomiting started. And it did NOT stop. I threw up everywhere. I heard them say
they had given me miraplex and raglan and I remember thinking that those things
had never helped me in the past. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="line-height: 115%;">At one point, vomit
got everywhere and the nurse snapped at me for not keeping it “in the bucket.”
I had been out of surgery for about 30 minutes. The vomit was everywhere and the nurses kept shaking their heads and complaining about it. I started to cry when I saw my husband because even though he has seen me go through 4 surgeries this year and given birth 3 times I was </span></span><span class="Apple-style-span" style="line-height: 18px;">embarrassed</span><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="line-height: 115%;"> for him to see me like that. </span></span></span><br />
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><br /></span><br />
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">I also started shaking uncontrollably.
The NS came in and when he saw me covered in vomit and shaking he snapped at
the nurse and told her to get me something better for the vomiting, cover me
up, and change my clothes. He also touched my cheek and called me “honey.” I
was grateful for his presence. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">The need to pee
continued but the nurses were not on top of it. I felt it trickling down my
legs and when I called them they told me they would have to “check my orders.’
Finally, they came over and told me that I needed to get up and move around and
that I could go to the toilet. I was about 45 minutes post-op. Pete helped me
walk across the hall to the bathroom. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">Ten minutes later,
I needed to go again. This infuriated the nurse who insisted that I had just
gone 10 minutes before. I didn’t care. I still needed to go. They had pumped 4
hours worth of fluid into me and I didn’t have a catheter. That stuff has to go
somewhere!<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-8pmTHd-ZTrg/T87V__bgM-I/AAAAAAAAICk/pgO6p87h08k/s1600/103_9538.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://3.bp.blogspot.com/-8pmTHd-ZTrg/T87V__bgM-I/AAAAAAAAICk/pgO6p87h08k/s320/103_9538.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">our hotel room</td></tr>
</tbody></table>
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><b>Moving to a room</b><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">Two hours later, I
was moved to a room. In the room, I was given zofran for nausea and oxycodone
for pain. My nurse was great. She immediately got me an ultrasound machine and
looked at my bladder. Sure enough, it was full. She said it was a good thing
that I was peeing so much and she encouraged me to go as often as I could. She was the first, and only person, not to make me feel guilty about needing to pee. I
ended up getting up every hour for the next 10 hours or so until my bladder
finally emptied itself. She also brought my pain meds every 4 hours, telling me
that we needed to stay ahead of the pain so that it didn’t get too bad. This was good since I was still fading in and out of consciousness. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">The pain was manageable
but it did certainly hurt. It was also very, very uncomfortable. It’s hard to
find a good way to rest when you have a gash in your head. Mom and Pete looked
at my scar and were happy that they didn’t shave much hair off. I was happy,
too!<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">My NS came in and
checked on me and was very caring. Pete said that my crowding had been bad and
that I’d had little flow. They didn’t have to remove C1 or C2, though, just
shave them. The NS joked around with me and made me feel comfortable about the
procedure. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><b>During the night</b><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">The night was
rough. Aside from getting up every hour to pee, I couldn’t sleep. Mom stayed
with me so that I wasn’t alone and although the room was huge and nice (only
open for a month at this point so far) it’s still a hospital room. The kind
nurse ordered me some jello, mashed potatoes, and soup. I ate and drank what I
could. The nausea was still really bad but was being controlled with zofran and
phenergan. I continued on with the oxycodone. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><b>The next day</b><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">The next morning,
Mom left to head back to the hotel to relieve Pete so that he could get some
sleep. The plan was for Pete to come over when he woke up, sometime in that early
afternoon. This is where things started to get interesting. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">The inside of my
mouth tasted horribly. It was really dry but also felt gritty. I got up and
brushed my teeth and washed my face but I couldn’t taste anything. I told the
day nurse (we shall caller Sarah) about it but she said it was normal. It also
hurt to swallow. Like razor rods were going down my throat. I tried to eat
breakfast but it hurt too bad and nothing tasted like food. It all tasted like
chalk. I looked on the inside of my lip and had what appeared to be a huge
fever blister. I took a picture of it. Sarah was not impressed. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">Although I had been
getting up around the clock to pee and take laps around my room and do my
exercises, Sarah informed me that I would need to start taking walks up and
down the hallway. At this point, I was 20 hours post-op. She had apparently
missed my other trips up and up down the hallway, despite the fact that she had
waved at me. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">Sarah also informed
me that I would need to take a shower that day. I thought it was a little soon
to be that steady on my feet, but, she was the nurse. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">So, I took yet
another walk down the hallway. Alone. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">My NS’s RN came in
and seemed pleased with my progress. She liked that I was moving, could do my
neck exercises, and appeared alert. In fact, she told me I could go home in a
few hours. That means that my total hospital time for brain surgery was a
whopping 29 hours. Yep, about 2 days shorter than getting a hysterectomy. I was
in longer for all of my bouts with dehydration. I was shocked. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><b>Pain control</b><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">Sarah, unfortunately,
did not have such regards for my pain control as my night nurse had. Sometimes,
I would dose off. She would miss the dose if I didn’t call for it on time,
making me an hour or more late to take it. This made it difficult to stay ahead
of my pain. At one point, she snapped at me that I had called her 15 minutes
early. She didn’t bring me muscle relaxer until 2 hours after I needed it,
saying that there had been a problem with the pharmacy. We were kind of glad to
be leaving since we figured that it would be easier to manage my pain at home
where we could actually follow a schedule. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">She continued to
remain unimpressed with the pain inside my mouth. The nausea continued to be a
problem but since I wasn’t eating it didn’t present a huge issue. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><b>Walking<o:p></o:p></b></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">Until I checked
out, Sarah insisted on my walking every hour. The walks lasted anywhere from
15-20 minutes. She had me get out of bed for a total of 17 times. That means
what within 21 hours of brain surgery I had walked a whopping 3 hours. I don’t
walk that much on a normal basis. I was exhausted. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<a href="http://3.bp.blogspot.com/-I9RYnSe-fLY/T87VcdsMtcI/AAAAAAAAIA4/AYwIZL7bVxM/s1600/103_9480.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="180" src="http://3.bp.blogspot.com/-I9RYnSe-fLY/T87VcdsMtcI/AAAAAAAAIA4/AYwIZL7bVxM/s320/103_9480.JPG" width="320" /></a></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">Yet, she snapped at
me that if I didn’t start walking more and sitting up more they wouldn’t let me
leave. I’m not sure why she was so convinced I was lazy-I hadn’t even been
there a full day yet- I hadn’t had time to show my laziness to her!<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">I did take a
shower, alone, and without any assistance. I thought that was weird. But, it
did feel good to get clean. She brought me some soap to use. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"></span><br />
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"></span></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">At one point, I tried to walk back down the hallway but my feet are tiny (I wear a size 4) and the booties had stretched. I slid and fell against the wall so I took them off. Sarah jumped onto me for being barefoot. I went back to bed. </span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><b>Lunch</b><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">Kind of the final
insult of the day was when I ordered lunch and my grilled cheese came on molded
bread. I only wish I could make that up. But, of course, I took a picture. They
released me in pain and on unsteady feet and I headed back to the hotel. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><b>Life at the hotel</b><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">It was much better
being at the Hyatt. We had a lovely suite and I could get plenty of rest there.
The hospital social worker had found a pharmacy that would take my insurance
and Pete got it filled. He made a schedule so that I could take everything on
time. They sent me home with enough pain medication to last 5 days. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">At the hotel, I
slept a lot, Pete washed my hair every day as per the instructions, and I went
down for breakfast each morning. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">By Day 3 I was
starting to feel sick again though and backed off. I slept most of the day and
Mom brought the kids home with her. My head felt sore and stiff and sitting up
was painful. My feeling inside my mouth made eating almost impossible. I threw
up a few times. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><b>Back at home</b><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">On Day 5 we went
home and on Day 6 I felt the worse. We called the NS’s RN and it was determined
that I might have a small CSF leak. I was told to lay flat and drink plenty of
fluids. It might correct itself. So, I did this. Without my pain meds, my pain
started reaching a level 8. With them, I could manage at around a 6. Still, “managing”
was not a great word here. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">On Day 7 I went
into my PCP. She prescribed me some zofran for nausea and something for
constipation. She was also concerned when she looked inside my mouth and saw a
huge thrust infection going all the way down my throat and covering my mouth
and tonsils. No wonder my mouth had felt bad! I got antibiotics for that as
well. This CAN happen at a hospital following surgery, thanks to the breathing
tube. The fact that it went untreated and ignored was unacceptable. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">I talked to her
about the pain and how I wasn’t managing it well, despite the mucle relaxers,
pain pills, and massages from Pete. She told me to talk to the NS, that she
could give me something but that it wouldn’t be as strong as what they could. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><b>Talking to the NS</b><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">I called the NS
nurse back and she said that they would give me more steroids, that they might
help with the pressure and therefore alleviate any nausea and pain. So, I
started taking them last night. Today, I broke out into hives. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><o:p><br /></o:p></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><o:p></o:p></span><br />
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">Pete talked to the
nurse as well and despite the fact that their website regarding Chiari surgery
says that “<span class="apple-style-span">After surgery, pain is managed with
narcotic medication. Because narcotic pain pills are addictive, they are used
for a limited period (2 to 4 weeks). Thereafter, pain is managed with
acetaminophen (e.g., Tylenol) and nonsteroidal anti-inflammatory drugs (NSAIDs)
(e.g., aspirin; ibuprofen, Advil, Motrin, Nuprin; naproxen sodium, Aleve).</span></span>”
she told him that they would not give me anything but Tylenol from here on out.
I am not 2-4 week post-op-I am barely 7 days. <o:p></o:p></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span class="apple-style-span"><span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">The nurse argued with Pete about pain control and said that brain
surgery is easily managed with Tylenol. In addition, she said that I was “doing
well” when I left the hospital so they had no reason to be concerned. Yes, I
did have good neck mobility when I left but I was in pain, nauseated, and sent
home with an untreated infection that can lead to respiratory problems and
other issues. I don’t classify that as “doing well.”<o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span class="apple-style-span"><span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><b>What to do from here</b><o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span class="apple-style-span"><span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">I am not sure what to do from here. I have enough pain control to get me
through the night. The NS said I could drive back to Cincinnati tomorrow for
Tylenol but it would be nearly 5 hours in the car and, frankly, sitting up for
longer than 30 minutes is pushing it at this point. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span class="apple-style-span"><span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">My incision site does look good. I do have some slight swelling to the
left of it and that whole side of my head feels numb, probably from the clamp, but
it doesn’t look infected or anything. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span class="apple-style-span"><span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">I am wondering if maybe because they do so many of these (my NS alone
did 2 on the day I had mine done) they have become insensitive to patients and
their needs. They definitely have unrealistic expectations in terms of
recovery. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span class="apple-style-span"><span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">None of the people involved in m recovery have made any mention of
Ehlers Danlos Syndrome, which I know can affect recovery. It might be one of
the reasons I am having so much trouble. An acknowledgement of this might be
helpful when it comes to getting the treatment I need. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span class="apple-style-span"><span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">I had people in my life who had been through the surgery and said they
would support me and help advocate for me but they have dropped off the face of
the earth. So Pete and I feel as though we have been slightly abandoned. Others
in my life seem to feel like since I am home I must be doing okay. I feel far
from okay, I gotta tell you. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span class="apple-style-span"><span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">On the bright side, my friend Katie sent me flowers, Abby sent me a
gift, and my cousin sent me a get well card. It’s always nice to get things in
the mail and I am appreciative of those things. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span class="apple-style-span"><span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">I hope to continue to improve but am definitely open for suggestions as
far as to what do at this point. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span class="apple-style-span"><span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">Please excuse any typos and stuff. </span></span><span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
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<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-mTdpRiPNuIg/T87V6usBXiI/AAAAAAAAICU/y6DH7lszu8E/s1600/103_9518.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="http://2.bp.blogspot.com/-mTdpRiPNuIg/T87V6usBXiI/AAAAAAAAICU/y6DH7lszu8E/s320/103_9518.JPG" width="320" /></a></div>
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<div class="MsoNormal" style="text-align: left;">
<span style="font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><o:p><br /></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">So
how can Ehlers Danlos affect surgery outcomes and why should this have been a
concern?<o:p></o:p></span></b></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">As a connective tissue disorder, EDS can have a huge
affect on the healing of the wounds, as well as surgical care and pan problems.
Because my skin does not produce the necessary collagen, it cannot heal on its
own like normal tissue would. In addition, because no echocardiogram or any
heart monitoring was carried out, we are not 100% certain that I do not have
vascular EDS. Vascular EDS is deadly and could still send my body into a heart
attack or shock. Plus, EDS can make rejection of the durapatch even more likely
since it is not my own tissue. All of these things should have been taken into
account. <o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<b style="mso-bidi-font-weight: normal;"><span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">To show some comparisons, here are what other
patients can expect:<o:p></o:p></span></b></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><a href="http://www.precisionneurosurgery.com.au/"><span style="color: black;">http://www.precisionneurosurgery.com.au/</span></a> “<strong>Discharge</strong> <span class="apple-style-span">The amount of time spent in the hospital may be
different for each patient, but is usually 3-5 days.</span>”<o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;"><a href="http://chiarilifeline.blogspot.com/-"><span style="color: black;">http://chiarilifeline.blogspot.com/-</span></a> <strong>"How
long can I expect to be hospitalized?</strong></span><br />
<span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">
<span class="apple-style-span">Posterior Fossa Decompression/Revision: 5-7 days</span><o:p></o:p></span></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
<div class="MsoNormal" style="text-align: left;">
<span class="apple-style-span"><span style="color: black; font-family: 'Times New Roman', serif; font-size: 12pt; line-height: 115%;">The Chiari Care Center- “After discharge from the hospital, you may be
up and walking around the house the first week. This is a time of healing, so
it is important to remember to not overdo the activity.</span>” (nothing about
walking 3 hours+ less than 24 hours after surgery) “Most people resume their
normal medications after surgery. You will also receive a prescription for pain
medication after discharge. The pain medication works best if taken every 6-8
hours before the pain worsens. To reduce upset stomach, take the medication
with food. Pain medication should not be necessary after the second week</span>)<o:p></o:p></div>
<div class="MsoNormal" style="text-align: left;">
<br /></div>
</div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com2tag:blogger.com,1999:blog-380300495800621405.post-58456737108779102142012-06-01T08:13:00.003-07:002012-06-01T08:13:55.736-07:00Day 4<div dir="ltr" style="text-align: left;" trbidi="on">
Here is a picture of my scar on Day 4. You can see, too that one my fellow SIDS moms sent me some flowers to the hospital. I think that is incredibly sweet and I was so excited. In my guilt, Iris got a dollhouse to play with at the hotel.<br />
<br />
So far okay. They've done some nerve damage to my head where the clamps were to hold it in place and tha tmight never go away but I don't mind. Maybe that means I can finally wear a frenchbraid or at least brush my hair without it hurting! :-)<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-0q26WpTI7p4/T8jbs3lP86I/AAAAAAAAH_c/tQD22rQdxEw/s1600/103_9528.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://1.bp.blogspot.com/-0q26WpTI7p4/T8jbs3lP86I/AAAAAAAAH_c/tQD22rQdxEw/s320/103_9528.JPG" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">flowers from lukegrantsmom</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-TejJOvuUYsA/T8jb19EJRtI/AAAAAAAAH_k/qrGJ9a879g0/s1600/103_9531.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://2.bp.blogspot.com/-TejJOvuUYsA/T8jb19EJRtI/AAAAAAAAH_k/qrGJ9a879g0/s320/103_9531.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">iris' dollhouse</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-71rPPsDb_wY/T8jb83cic0I/AAAAAAAAH_s/Zs_4utO6zZs/s1600/103_9537.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="http://3.bp.blogspot.com/-71rPPsDb_wY/T8jb83cic0I/AAAAAAAAH_s/Zs_4utO6zZs/s320/103_9537.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">scar on day 4</td></tr>
</tbody></table>
The real complications don't start taking effect until on down the road so this is actually the good part of the recovery process. So far so good, just tired. And kind of doped up as you can tell by the writing.</div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com2tag:blogger.com,1999:blog-380300495800621405.post-46225721594542594682012-05-30T03:17:00.004-07:002012-05-30T03:17:56.199-07:00Rebecca has had her surgery<div dir="ltr" style="text-align: left;" trbidi="on">
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;">Hello all, </span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;"> This is Rebecca's husband posting, because despite her pluck not even she can post a blog entry 24 hours after reporting to the hospital for brain surgery - although she is doing very well. </span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;">We arrived at the diagnostic center (which made me think we were going to start all very again) 45 minutes early and before they opened. We then sat down and made bad jokes while I took pictures of everything and Rebecca’s hogged the only magazine. </span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;">Rebecca's surgery went well, there was a moment there about 40 minutes after she was taken back where I jumped out my skin as the telephone rang in the waiting room and my name was called. Fortunately it was just the nurse telling me the surgery was about to begin now Rebecca had been "positioned" - when the anesthesiologist RN described this process he asked if we "knew what a C clamp is?" which I thought was funny.</span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;">I'm sure the phone calls during the operation to the waiting room were meant to be helpful and reassuring, and they were, so long as I managed to climb back into my body and pick up the phone half expecting the worlds "there's been a complication...do you know what happens when a C clamp….?" </span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;"> Sorry, it's late enough to be very early and I'm a strange mixture of tired, anxious and relieved. </span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;">Her herniation had only just reached her C1 vertebra, so it was not as long as they thought and they did not have to cut it. They did "shave" a portion off to give her room however and it was clearly thick causing blockages around the sides according to the surgeon. </span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;">The surgeon was very friendlily when he called me back into the small consultation room, and later when he visited. Rebecca also tells me he got on top of the nurses when he didn't feel she was being kept warm enough or her nausea - which was has bee bad but better then other times - was no being kept under control. All in all we are very happy and impressed with him. He feels the operation was a great success and expects her to make a good recovery. </span><span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;">Of course he is one of them go-get-'em / up-and-at’am types but Rebecca does seem to be doing well all the same. </span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;">She spent yesterday snoozing, running - shuffling - to the bathroom, and taking walks around her room.</span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;"> Thanks all, </span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: 'Trebuchet MS', sans-serif; font-size: x-small;"> Peter</span></div>
</div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com0tag:blogger.com,1999:blog-380300495800621405.post-10967794177514866662012-05-28T01:01:00.001-07:002012-05-28T01:01:26.737-07:00Stages of grief: depression<div dir="ltr" style="text-align: left;" trbidi="on">
Tomorrow is my surgery. I am worried. I am nervous. People telling me that "everything will be fine" doesn't make me feel better. The last time people told me that my son died. My track record with "everything will be fine" is not a good one.<br />
<br />
I believe I am in the depression stage of grief. I feel unmotivated, sad, and depressed. I might actually be in a bit of denial, too.<br />
<br />
I have thought about canceling this but I don't want to get worse. Is it better to have it now then to wait 10 years when I am older and might not recover as easily? I hope so. I don't want to be a bad parent to my kids now (and I feel like I am) but isn't that better than being a dead parent? I don't know.<br />
<br />
I know that I could technically get in the car tomorrow and get in a wreck and die and that death looms around every corner. However, it isn't often that you know in advance that you are facing something that might very well kill you. I have met people who have died from this surgery. I have met people who suffered severe complications. It's not unheard of.<br />
<br />
There have been times in the past few weeks when I have done things and wondered, is this the last time I will do them? It's not a good feeling.<br />
<br />
On the other hand, this time next week I will be back home and recovering and so I look forward to that. In preparation, I have decided NOT to watch anymore CRIMINAL MINDS in the meantime so that I can have a bunch of them recorded on the DVR for when I get home. </div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com0tag:blogger.com,1999:blog-380300495800621405.post-12712906866509809092012-05-26T00:34:00.000-07:002012-05-26T00:41:30.951-07:00Misdiagnosed<div dir="ltr" style="text-align: left;" trbidi="on">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">A lot of people with Chiari Malformation find themselves with various diagnoses over the years until they finally find someone who understands Chiari and gives them the right one. (Then they have to worry about finding someone who knows what to do about it.)</span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">I also got a lot of misdiagnoses throughout my life. Here are some of the highlights:</span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">- a heart condition (nobody could ever figure out what said heart condition might be, other than a murmur, but for years I went through a gamut of heart monitors and cardiologists trying to figure it out. On the plus side, it DID get me out of PE.)</span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">- Chronic sinusitis (Now this one might be legit. Often, sinusitis and Chiari go hand-in-hand. I am not convinced, though, that what they thought was sinus pressure was just that-it might have been the CSF buildup.)</span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">- Epilepsy (This was the big one. Although people with Chiari CAN have epilepsy, my docs and I are pretty convinced that what my neurologist said was epilepsy was actually vasovagal syncope, a symptom of Chiari.)</span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">- Depression/anxiety (Yes, my son died. But my had been around long before that. Depression is a common misdiagnosis for Chiari patients. Ironically, those with Chiari who keep getting a runaround do often end up depressed.)</span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">- "normal pregnancy pains" (I never understood why I experienced so much full body, debilitating pain when I was pregnant. I was told that it was "normal" yet nobody else I knew found themselves virtually disabled by pain when they were pregnant. Now we know that pregnancy made the EDS worse.)</span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">- vitamin deficiency (My surgeon was sure that I was a vegetarian when he did my hysterectomy since my tissue kept falling apart in his hands. He said a good multi-vitamin would fix it right up. It's EDS, not a vitamin deficiency.)</span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">- Vitamin B12 deficiency (Yes, a B12 problem will cause some of the symptoms. But I was tested for that. And it was normal.)</span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">- Restless leg syndrome (That might explain the pain in my legs but how was RLS supposed to account for memory loss and back tingling?)</span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">- Sciatica (Yes, that might account for the pain in my hips and the tingling, but what about the cognitive problems?)</span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">None of my diagnoses ever made sense completely. When my PCP finally got my the MRI in January and got the report back, we were excited. FINALLY something that actually put all of these symptoms together in a cohesive way that let us know we weren't (or at least I wasn't) crazy.</span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">It WAS all in my head. </span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">According to the Mayfield Clinic, Chiari is often misdiagnosed as "<span class="Apple-style-span" style="line-height: 17px;"><span class="Apple-style-span">fibromyalgia, migraine headaches, sinus disease, multiple sclerosis, and other complex disorders of the nervous system." My doctor and I actually thought it might be multiple sclerosis. That was what we were expecting the report to say. Others have been misdiagnosed with </span>Chronic </span><span class="Apple-style-span" style="line-height: 17px;">Fatigue</span><span class="Apple-style-span" style="line-height: 17px;"> Syndrome</span><span class="Apple-style-span" style="line-height: 17px;">, Parkinson's Disease, dementia, </span><span class="Apple-style-span" style="line-height: 17px;">carpal</span><span class="Apple-style-span" style="line-height: 17px;"> tunnel syndrome, irritable bowel syndrome, bursitis, TMJ, and PTSD. </span></span><br />
<span class="Apple-style-span" style="line-height: 17px;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: 14px;"><br /></span></span><br />
<span class="Apple-style-span" style="line-height: 17px;"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: 14px;"><br /></span></span></div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com0tag:blogger.com,1999:blog-380300495800621405.post-41080573285045516902012-05-19T02:29:00.002-07:002012-05-19T02:29:21.578-07:00Preparing for surgery<div dir="ltr" style="text-align: left;" trbidi="on">
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">I talked to the nurse today and she gave me some information about the surgery. It actually left me with a lot of questions and made me a little nervous. I'll go over some of the finer points. </span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">* The surgery is at 7:30 AM. I have to be there at 5:45 AM. </span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">* It should take 3 hours. (Everything else I have been reading says it's more like 5-7 hours.)</span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">* They will not give me nausea and pain medication unless I ask for it. (Again, other accounts from other people say that they got a morphine pump. Why do I always get the surgeons that don't believe in pain management? They're cutting open my head for goodness sakes!)</span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">* They are not using my own tissue for the dura patch but, instead, are relying on a synthetic (bovine) patch. (This makes me nervous because there is a bigger chance of rejection since I have EDS.)</span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">* I will be in the hospital for three days. (We are paid in the hotel for 5. Might just stay up there an extra day or two so I don't have to drive back right away.)</span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">* The unit is new and has only been there for two weeks. All rooms are private and Pete can spend the night with me in the room. There are free snacks on the floor. (Well, that's all good!) </span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">* For at least six weeks I am not allowed to: do laundry, do the dishes, pick up anything heavier than a carton of milk, strain, cough more than a couple of times, drive, bend over, lift anything above my head, or basically bang my head against anything. </span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">* Because of an increased risk of infection, I have to bathe with the antibiotic soap everyday, for at least three days, prior to the surgery. </span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">* Physical therapy might be ordered since the muscles in my neck are going to be moved apart and altered.</span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">* I will not be in ICU. (I thought that I would be for at least the first day to be monitored.) </span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">Considering what happened after my hysterectomy with pain management, I am really freaking out about the pain thing. The lack of vigilant monitoring (no ICU) concerns me, too, since I have a history of not handling surgeries well. I stopped breathing after a laparscopy and my oxygen continued to drop below 50% after my hysterectomy. Had Pete and Melissa not been there to get the nurse to give me oxygen, I don't know what would have happened. They said I kept forgetting to breathe and turned blue a few times. </span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">I am also a little concerned with the whole blase way they seem to be treating this. Like I am getting an ingrown toenail removed. But, he is the specialist and apparently knows what he is doing. </span></div>
</div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com3tag:blogger.com,1999:blog-380300495800621405.post-91531517388513081692012-05-17T02:37:00.000-07:002012-05-17T02:37:00.606-07:00Heart issues=POTS<div dir="ltr" style="text-align: left;" trbidi="on">
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">For many years, I was treated as though I had a heart problem. I wore a monitor on more than one occasion but they could never find anything more than a murmur. (I still have it.) Eventually, it was decided that I didn't have a heart problem, but that I had epilepsy. Now, we're not even sure that diagnosis is accurate. </span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">Because my murmur cannot be heard with every beat, it is considered a <span class="Apple-style-span" style="color: #222222; line-height: 14px;">Grade I Faint on auscultation. This means that not everyone can hear it and that it's only discernible under the best of circumstances. </span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="color: #222222; line-height: 14px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #222222; line-height: 14px;">Many people with Chiari also have </span><span class="Apple-style-span" style="color: #333333; line-height: 23px;">Postural Orthostatic Tachycardia Syndrome (POTS). Like everything else associated with Chiari, it is not curable and can cause a lot of problems. I have not been tested for this and don't really have many of the symptoms, but I thought I would mention them anyway...</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="color: #222222; line-height: 14px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="color: #222222; line-height: 14px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #333333; line-height: 23px;"></span><span class="Apple-style-span" style="color: #222222; line-height: 14px;"><b>Symptoms</b>:</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="color: #222222; line-height: 14px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="color: #222222; line-height: 14px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">- fatigue</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="color: #222222; line-height: 14px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">- irritable bowel syndrome</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="color: #222222; line-height: 14px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">- heart palpitations</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="color: #222222; line-height: 14px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">- dizziness</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="color: #222222; line-height: 14px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">- headaches</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #222222; line-height: 14px;">- </span><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;">Tachycardia (postural)</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;"></span><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;">- Chest discomfort</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;"></span><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;">- Dyspnea</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;"></span><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;">- Tremulousness</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;"></span><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;">- Exaggerated physiological tremor</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;"></span><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;">- Cold sweaty extremities</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;"></span><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;">- Exercise intolerance</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;"></span><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;">- Lightheaded dizziness, presyncope, and syncope</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;"></span><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;">- Blurred or tunnel vision</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;"></span><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;">- Headache, possibly migrainous</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;"></span><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;">- Mental clouding (feeling “in a fog”; “brain fog”)</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;"></span><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;">- Nausea</span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;"></span><span class="Apple-style-span" style="color: #222222; line-height: 14px;"><span class="Apple-style-span" style="-webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; color: black; line-height: normal;">- Abdominal discomfort</span> </span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #222222; line-height: 14px;"><br /></span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #222222; line-height: 14px;">There are some medications that can help with some of the symptoms. You can read more about that HERE: </span></span><a href="http://www.dinet.org/what_helps.htm">http://www.dinet.org/what_helps.htm</a></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="color: #222222; line-height: 14px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="color: #222222; line-height: 14px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="color: #222222; line-height: 14px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">Where this gets tricky is that all of those symptoms can also cross over with EDS and Chiari so it can be hard to say which disorder is causing what. That's one of the reasons why it's difficult to say if the </span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="color: #222222; line-height: 14px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">decompression surgery is going to be helpful in alleviating the symptoms. </span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="color: #222222; line-height: 14px;"><span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><br /></span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #222222;"><span class="Apple-style-span" style="line-height: 14px;">This is not necessarily something I think I have, although a lot of the symptoms are similar to what I have. But many people who have Chiari, EDS, and cerviocranial instability also have POTS so it wouldn't be far-fetched to think it's there, too. In the meantime, I will hold onto my little murmur. </span></span></span></div>
</div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com2tag:blogger.com,1999:blog-380300495800621405.post-3312187936757457222012-05-16T02:52:00.000-07:002012-05-16T02:52:03.550-07:00Appointment with the PCP<div dir="ltr" style="text-align: left;" trbidi="on">
Today I met with my PCP for pre-op stuff. She had to sign a bunch of papers, do some bloodwork, and basically evaluate me to make sure I'm not really nuts and stuff. I'm pretty sure I passed but you never know.<br />
<br />
We have to find me a good neurologist to monitor me after the surgery and a rheumatologist to deal with the Ehlers-Danlos Syndrome. It's not going to be easy since most doctors have limited knowledge of Chiari and some haven't even heard of the EDS. To make things easier, though, my PCP shares in my frustration with the lack of knowledge on these things and has threatened to go back to school to specialize in Chiari herself. I think she should. There is clearly a market for a knowledgeable specialist who can monitor things after surgery. The forums are filled with people looking for this very thing.<br />
<br />
I saw my family over the weekend and tried explaining this thing to them. They were confused (aren't we all!) because they thought this surgery would "cure" me. It's hard to explain that this isn't going to cure me, it's just going to stop the progression of the condition. It might not even help my symptoms at all. We actually don't know WHAT it's going to do until after I get out of it and start recovering.<br />
<br />
In the meantime, I am busy taking pictures of everyone and making notes, just in case they clip something while they're in there and I forget who everyone is. Incidentally, I am doing the same thing for the cast of CRIMINAL MINDS. </div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com0tag:blogger.com,1999:blog-380300495800621405.post-50197906446206334542012-05-08T00:06:00.002-07:002012-05-08T00:06:54.418-07:00Chiari Stages of Grief: BargainingNow, as the surgery date looms before me, I find that I am in the bargaining stage.<br />
<br />
Maybe I don't REALLY need it.<br />
<br />
If I just change my diet, my symptoms will go away.<br />
<br />
I'll cut out all processed foods.<br />
<br />
I'll do better at exercising.<br />
<br />
I'll just fight through whatever pain I'm having.<br />
<br />
I'll take a bunch of vitamins.<br />
<br />
I'll talk to my doctor about treating all 40 symptoms individually.<br />
<br />
I'll find God. (It seems to work for some people, why not?)<br />
<br />
Well, you get the picture.<br />
<br />
I don't particularly want yo get my head cut open. I don't want my summer ruined. I don't want my kids to have a dead or disabled mom if something goes wrong.<br />
<br />
It sucks that this is the only option.Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com0tag:blogger.com,1999:blog-380300495800621405.post-30123839388941453752012-05-05T01:03:00.002-07:002012-05-05T01:03:53.016-07:00Surgery is scheduled<div dir="ltr" style="text-align: left;" trbidi="on">
On Wednesday we went back to Cincinnati to meet with Dr. Tew again. On the way up, I stopped at the Mayfield Imaging Center in Northern Kentucky and had a MRI of my cervical and thoracic spine. It was extremely hard on my back to lay there flat for so long and by the end of the 45 minutes I was almost in tears. For the first time ever, too, I felt claustrophobic and had to keep my eyes closed so that I wouldn't freak out.<br />
<br />
Dr. Tew reported that there is no syrinx on my spine, which was kind of a surprise since so many of my symptoms are back related. I kind of hoped that there was because draining the cyst with a shunt seemed like a more straightforward procedure than the others.<br />
<br />
He did report hypermobility thanks to me cerviocranial instability. Sometimes, the symptoms of CCI and Chiari can mimic one another so there was a chance that many of my symptoms were actually related to my CCI. However, he thinks that the slippage of my vertebrae is so minimal that it's not really causing my issues. Therefore, the malformation is most likely the culprit.<br />
<br />
I know this sounds confusing, but EDS, CCI, Chiari, Syringomyelia, and Tethered Cord Syndrome are all connected and in some instances have identical symptoms. It can be hard to know what is causing what.<br />
<br />
We will NOT be doing the fusion part of the surgery. We will be removing the C1 and possibly C2 vertebrae, doing the laminectomy, and putting on the duraplaster. He won't be harvesting my own tissue, which concerns me a little bit, but will be using bovine tissue. Sam is happy that I will now be part cow.<br />
<br />
The surgery date is set for May 29th. I will be in the hospital for about 4-5 days and that means we'll have to stay in a hotel for that long. Or rather, Pete will. I'll be in the hospital, of course.<br />
<br />
I am very nervous about this surgery. It's incredibly risky with no guarantees. It might not even help my symptoms. Generally, it's done to stop things from getting worse with symptom relief kind of being a by-product of that. A lot of people have noticed a reduction of symptoms but others have not.<br />
<br />
A lot of people have also died having this surgery. I am scrubbing the house down before I have it, in an attempt to try to sterilize it. A friend asked if she could bring her kids to the hospital to see me and I said no. I know that sounds mean, but they are always sick and the last thing I want is them to be bringing an infection into the ICU. Most of the deaths have occurred post-surgery and have been due to infections like bacterial meningitis.<br />
<br />
I know that every surgery has risks, but the risks that are specific to this surgery are scary as hell. They include, but are not limited to:<br />
<br />
- a CSF leak<br />
- respiratory failure<br />
- bacterial meningitis<br />
- nerve damage<br />
- permanent brain damage<br />
<br />
In some cases, the duraplaster hasn't held and the brain has fallen through the hole. Um, yikes!<br />
<br />
Because of the EDS, my recovery will be trickier. I don't heal as quickly and pain medicine affects me strangely. My past epidurals might as well have been Kool Aid.<br />
<br />
The list of things I can't do after the surgery is kind of crazy, too. Those would be:<br />
<br />
- no straining<br />
- no excessive coughing<br />
- no bending over<br />
- non unloading the dishwasher or washing machine<br />
- no picking anything up over 5 pounds<br />
- no driving<br />
<br />
I have this image of coughing and having my brain fall out the back of my head.<br />
<br />
Within 6 weeks I should start coming off the heavy pain medications. Recovery (full) can take up to a year or longer. I don't when I'll ever "feel better." Or if. That's a scary thought, too.<br />
<br />
At this point, I'm really just looking forward to getting it over with. </div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com2tag:blogger.com,1999:blog-380300495800621405.post-91031177909798632522012-04-25T23:31:00.001-07:002012-04-25T23:31:41.120-07:00New appointment with the NS<div dir="ltr" style="text-align: left;" trbidi="on">
The neurosurgeon's office did call the following day. I have a new appointment set up for next Wednesday. Our plan is to drive to Northern Kentucky for the MRI at 1:00 pm and then on up to Cincinnati for the appointment with the neurosurgeon at 4:00 pm.<br />
<br />
I'm very nervous now.<br />
<br />
It seems like every time I step foot in the doctor's office I get diagnosed with something new.<br />
<br />
The delay in surgery is good because it means that I'll have more chance to prepare and clean the house. I know that might sound funny but it makes me feel better. If I am going to have to stay at home for a month I'd at least like a clean bathroom, bedroom, and sheets to look at.<br />
<br />
The pain and pressure are almost unbearable sometimes, though.<br />
<br />
<br /></div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com0tag:blogger.com,1999:blog-380300495800621405.post-67711684456730738492012-04-23T23:18:00.001-07:002012-04-24T02:26:41.094-07:00Neurosurgeon<div dir="ltr" style="text-align: left;" trbidi="on">
Today I met with the neurosurgeon. As it turns out, I need more testing thanks to cervio cranial instability. For those keeping count, that leaves me with:<br />
<br />
- Chiari Type I Malformation<br />
- Ehlers-Danlos Syndrome<br />
- Cervio Cranial Instability<br />
- Syrinx<br />
<br />
The reason this is important is because there is a change that some of my problems can be attributed to the hypermobility issues of this condition. Think of my head as being a big pumpkin on a toothpick. Eventually, it just can't hold itself up. We can't do surgery until we rule this out as being a huge issue. We know that it IS an issue, we just don't know how much of one.<br />
<br />
The reason that this is a problem is because the decompression might not be enough. Sometimes you have to have both:<br />
<br />
"<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 16px;">Some patients with symptomatic Chiari I Malformation and/or syringomyelia have associated craniocervical instability or ventral brainstem compression that contributes to their signs and symptoms. In some cases, bone and connective tissue abnormalities (such as Ehlers-Danlos) lead to instability of the craniocervical junction and ventral brainstem compression. In this small percentage (less than 5%) of Chiari patients, posterior fossa decompression alone may not improve symptoms and may, in fact, worsen symptoms. These patients may require occipitocervical fusion and, in some cases, removal of compressive tissue anterior to the brainstem." (</span><a href="http://www.csfinfo.org/node/180">http://www.csfinfo.org/node/180</a>)<br />
<br />
<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">There are other symptoms associated with the CCI that are similar to the Chiari symptoms (<span class="Apple-style-span" style="line-height: 16px;">headache, neck pain, dysphagia, decreased gag reflex, weakness, numbness, gait problems, hyperreflexia, C-2 numbness, facial numbness, torticollis and dizziness) so it's kind of hard to tell what is causing what at this point. </span></span></div>
<br />
Dr. Tew and his staff were very nice to me. He thinks that I have had a progressive cognitive and neurological functional loss over the pass 30 years that is severely impacting my quality of life. There is no cure, there is no other treatment available to me, I am not going to "get better." I might, with surgery, slow down the symptoms and improve my daily living somewhat.<br />
<br />
He ran other tests and uncovered other symptoms that I was unaware of. I have nerve damage, loss of gag reflexes, and very little hearing in my left ear. This condition has wrecked havoc on my body in ways that I was totally unaware of. I took my friend Ashley with me and when after the surgeon left (he spent more than an hour in the hospital with me) Ashley and I talked about it and he said he had no idea how bad this was and couldn't imagine living this way. I felt bad because his one of parents suffered from Alzheimer's but he compared it to that.<br />
<br />
While in the hospital we did a sublaxation X-ray for the cervio cranial instability. We will also schedule a full spinal MRI next week (they're supposed to call me tomorrow about that date and time) and another appointment to discuss surgery date and time. I will actually do the MRI at their imaging center in Northern Kentucky and then drive on up to Cincinnati for the appointment on the same day. They'll get the results by the time I get there.<br />
<br />
The CINE MRI did show blockage and my herniation is large enough to be causing my problems. I asked these questions.<br />
<br />
We weren't really sure what was going to happen today in the hospital but we were glad to get somewhere else. I feel confident that we are moving in the right direction now. I really hope that I don't have to have the fusion and that we can stick with the decompression. I am worried because when Pete pulls up on my head I do feel some relief from the pressure but maybe the decompression will be enough for now. </div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com2tag:blogger.com,1999:blog-380300495800621405.post-86039239661480125482012-04-07T02:10:00.000-07:002012-04-07T02:10:59.532-07:00Call from the NS<div dir="ltr" style="text-align: left;" trbidi="on">The nurse from the neurosurgeon's office finally called today. The results from the CINE MRI show that my CSF flow is blocked on one side. The blockage is moderate but could still be causing me problems. I don't understand this because it seems to me that if it's blocked at all it can cause problems.<br />
<br />
Anyway, due to my symptoms and the fact that there is some blockage the NS wants to meet with me and talk to me. They aren't sure that surgery will work for me since I am apparently in a gray area where it could go either way. She said that he would do some tests in his office and then talk about other options.<br />
<br />
Frankly, I am not interested in hearing them. I'm sorry, but the list of things that I have tried is a mile long. Someone on one of the Chiari boards told me that I needed to give them time to work. I'm sorry, but how much is enough time? Some of the things I tried for years. Isn't that enough?<br />
<br />
I am going to go meet with him and see what he has to say but I am starting to feel like it might be a waste of my time. I keep hearing over and over again about how you have to see a specialist but so far I have not been impressed with my experience. I can only hope that once I meet with the NS in person that I'll walk away with a better feeling. Right now, my experience has been based on miscommunication and secondhand information so I don't actually have anything negative to say about the NS himself-just the runaround I am getting when it comes to seeing him.<br />
<br />
The bottom line is that my flow is blocked and that could be causing my problems. Or, it might not be. I am supposed to have all of the related conditions looked into such as cervical cranial instability, syringomyelia, and tethered cord syndrome but so far nobody has been particularly worried about that. I hate to keep calling my PCP's office since they know my voice now when I call but she's the only one who seems to be able to get anything done. </div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com0tag:blogger.com,1999:blog-380300495800621405.post-12743457066081494232012-04-05T19:06:00.000-07:002012-04-05T19:06:07.281-07:00No Word Yet<div dir="ltr" style="text-align: left;" trbidi="on">I was supposed to hear something from the neurosurgeon's office yesterday. At 4:30 pm I called and left a message but they didn't return my call. Today, they did call me back, but it was just to say that they would find the person I needed to talk to. Apparently, that person was on the phone and busy at the time. I was assured that THEY would call me back, but they didn't.<br />
<br />
I took a nap earlier because I had a very rough night. Everything hurt and I couldn't eat because every bite made the rushing, throbbing pain in my head worse. When I went to sleep, I dreamed that the NS called me and that instead of Chiari he told me I had a chronic cough and high blood pressure. Seeing as to how I have neither, I was very confused.<br />
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I hate being in this limbo, not knowing what's going to happen next. Should I start getting ready to send my things in for the clinical trial in Maryland? Probably. </div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com0tag:blogger.com,1999:blog-380300495800621405.post-37703724611448749642012-04-04T23:56:00.001-07:002012-04-04T23:57:33.267-07:00CINE MRI Experience<div dir="ltr" style="text-align: left;" trbidi="on">Yesterday we went up to Cincinnati for my CINE MRI. On the phone, they told me that it would take about 2 hours and that I would have it done with contrast and without contrast. When I got to the imaging center, however, I was informed that it would only take 10 minutes.<br />
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<a href="http://4.bp.blogspot.com/-c7FzXpUkNc0/T31BqOUkTCI/AAAAAAAAG8M/R2hzRPrn9f4/s1600/cine+2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="212" src="http://4.bp.blogspot.com/-c7FzXpUkNc0/T31BqOUkTCI/AAAAAAAAG8M/R2hzRPrn9f4/s320/cine+2.jpg" width="320" /></a>There was virtually no wait time before they took me back and I was immediately lead into the MRI room. It was so quick that I was already in the room before I remembered my credit card was in my back pocket. Oops. Thankfully, I didn't get too far in and it worked later so it didn't get erased.<br />
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The actual MRI took less than 10 minutes-maybe 8 1/2. They did not use contrast. I did ask for a copy of the disk and they gave it to me on the spot.<br />
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The doctor was supposed to call me today but didn't. I've looked at the images myself and while I do looked corked up, I have no idea what to look at in terms of flow. So, I'll just wait and see what he says.<br />
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<a href="http://1.bp.blogspot.com/-gSHliWehPaE/T31BquaPbRI/AAAAAAAAG8U/nV980coKVgA/s1600/cine+3.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="225" src="http://1.bp.blogspot.com/-gSHliWehPaE/T31BquaPbRI/AAAAAAAAG8U/nV980coKVgA/s320/cine+3.jpg" width="320" /></a>I'm feeling very underwhelmed regarding this experience so far. I'm also not holding my breath for this surgeon's assessment of my condition. The fact that he has no interest in a syrinx or any other related Chiari condition (the whole point in going to a specialist is because they're supposed to be thorough) makes me a little leery. But, we'll see...<br />
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<a href="http://2.bp.blogspot.com/-ur_8jSBXBcI/T31CDNNoL8I/AAAAAAAAG8c/d5G0zOejUNU/s1600/cine+4.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" height="221" src="http://2.bp.blogspot.com/-ur_8jSBXBcI/T31CDNNoL8I/AAAAAAAAG8c/d5G0zOejUNU/s320/cine+4.jpg" width="320" /></a>If they don't call me back tomorrow then I'll make a call to them at the end of the day. In the meantime, here are some images from my Chiari CINE MRI.<br />
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</div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com0tag:blogger.com,1999:blog-380300495800621405.post-71167927106230093802012-04-02T01:04:00.000-07:002012-04-02T01:04:00.845-07:00Wasted time?<div dir="ltr" style="text-align: left;" trbidi="on">I have found an online group that has been incredibly helpful in my Chiari support stuff. They've answered some questions for me and pointed me in the right direction. I've also been made aware of a clinical trial through them and been able to research doctors.<br />
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One member posts a lot, and I do mean a lot. Everyday, it's a new questions. Literally hundreds of them. She wonders if she should quit work, apply for disability, all kinds of things. Well, today, I found out that she's never even been diagnosed. She got ahold of one of her MRIs, looked at it, and diagnosed herself. This troubles me. Self-diagnoses can get you in a lot of trouble. Not only can it be dangerous for you, but it can also make you taken less seriously at the doctors' offices when you go in there and TELL them what is wrong with you. You can't just go in and say, "I have Chiari." You can go in there and say, "These are my symptoms. Do you think it could be..."<br />
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I feel like my time has been wasted a little bit. I don't know why this has made me angry, but it has. I understand that this person's symptoms were very similar and that it could have been Chiari but now that they know what IS wrong (and it's not Chiari) I feel like I was kind of lead on.<br />
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Oh well. Nothing I can do about that. </div>Anonymoushttp://www.blogger.com/profile/06978106493173201688noreply@blogger.com0tag:blogger.com,1999:blog-380300495800621405.post-12267999232894915952012-03-31T23:08:00.000-07:002012-03-31T23:08:58.151-07:00Sleep paralysis<div dir="ltr" style="text-align: left;" trbidi="on">I'm usually not one to try to find rational explanations for things that seem paranormal or otherwise, but I cam across a discussion today that shed some light on something that's happened to me a lot. Now, I have a name for it: sleep paralysis. Like other symptoms, I had no idea it was Chiari related. (Clarification: for me it's probably Chiari related. Other people can have it, too.)<br />
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So heres the scenario...<br />
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I'm lying there in bed and am half awake, half asleep. Only, I can't move. I'm aware of everything that's going on around me but my body is breathing regularly, like I'm asleep, and my eyes are closed. It's a totally terrifying feeling. Sometimes, it will feel like my body is floating up towards the ceiling.<br />
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I thought I had just perfected astral projection. But, apparently, it is sleep paralysis.<br />
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Here is your link for more information on the topic: <a href="http://www.webmd.com/sleep-disorders/guide/sleep-paralysis">http://www.webmd.com/sleep-disorders/guide/sleep-paralysis</a><br />
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So why does this happen? More symptoms having to do with the blocked flow and crowding in the brain. It's amazing what all that stuff is causing.<br />
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It's apparently not dangerous or anything, although I am usually hit with a severe headache when I come out of it. Not that the headache is anything new, though.<br />
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