Friday, June 22, 2012

Another setback

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. 

Friday, June 15, 2012

Day 18

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.

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.

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. 

Wednesday, June 13, 2012

2 Week Follow Up

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.

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.

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.

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.

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.

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. 

Monday, June 11, 2012

pseudo tumor cerebri

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. 

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?

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. 

According to the Mayo Clinic's website, symptoms include:

  • Moderate to severe headaches that may originate behind your eyes, wake you from sleep and worsen with eye movement
  • Ringing in the ears that pulses in time with your heartbeat
  • Nausea, vomiting or dizziness
  • Blurred or dimmed vision
  • Brief episodes of blindness, lasting only a few seconds and affecting one or both eyes (visual obscurations)
  • Difficulty seeing to the side
  • Double vision (diplopia)
  • Seeing light flashes (photopsia)
  • Neck, shoulder or back pain
On the Chiari and Synringomleia site, they talk about PTC.

For treatment, it states that " In one retrospective review, it is claimed that up to 41.6% of failed Chiari patients may be diagnosed with pseudotumor cerebri syndrome.4 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."

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. 

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. 

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. 

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. 

Links to info about PTC:

Sunday, June 10, 2012

Day 13

I had a visitor today and that was nice. She brought me homemade brownies.

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.

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.

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.

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. 

Saturday, June 9, 2012

Day 12

Today is Saturday, June 9th.

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.

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.

The thrush is having difficulty clearing up since the steroids make it worse. I have about a day left of them.

So far, I have lost 15 pounds in 12 days. That is not totally unwelcome. :-)

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.

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.

If I don't get some kind of satisfactory reply or attention that I might seriously consider contacting the media.

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.

In the meantime, I continue to rest and try to eat and drink fluids. 

Friday, June 8, 2012

A more unified entry

I have created a page at the top called "My Surgery Story". You can find it here This should help you follow along better instead of having to jump around to all my entries. The timeline goes something like this, though:

Day 1 (29th): Day of the surgery 

12:00PM- moved to recovery
12-2:00PM- vomiting, walking around
2:00PM- moved to room
- walked for at least 10 minutes every hour until Day 2
- no catheter after surgery
- reported blisters and pain inside of mouth
- nurse did ultrasound and found full bladder that was not emptying completely

Day 2 (30th): released

- reported blisters, pain, and grittiness inside of mouth to nurse
- pain medicine sometimes 15 minutes late or more-muscle relaxer nearly 2 hours late
- reported nausea to nurse
- served molded bread in hospital
- reported too large booties that made me slip and nearly fall
- left alone unattended to shower and wash my sutures
- walked 15-20 minutes every hour
1:00-3:00pm- released from hospital

Day 3 (31st): hotel 

a little pain, some nausea, ate okay, rested

Day 4 (June 1st): hotel 

more pain, nausea, vomiting, rest, ate okay

Day 5 (June 2nd): home

came home, lots of pain, feeling of fluid in back of neck, nausea

Day 6 (June 3-Sunday): home

build-up of pressure, more vomiting, cold sweats, shooting pain

Day 7 (June 4-Monday): home

- called NS, prescribed steroids
- visited PCP (went home with scripts for nausea, constipation, and thrush)
- NS nurse told me if steroids don't help then I should come in on Wednesday
- that night, broke out into hives

Day 8 (June 5-Tuesday):

- called NS
- informed NS of increased pressure and pain and hives
- informed NS that I was almost out of pain medication (1 day left)
- NS did not offer instruction regarding hives
- was told that I could take Tylenol from there on out (7 days complete post-op, 8 days since surgery)
- double vision started

Day 9 (June 6-Wednesday): home

- NS called at 8:00AM and told me to leave for Cincinnati
- ran off road on drive up
- called NS and asked if we could move the appointment up an hour. nurse would not talk to me.
- receptionist called me back and told me not to come in at all-to wait until following Wednesday
- vomiting and nausea persisted
- horrible pain
- clammy sweats from pain
- double vision
- completely out of all pain meds

Day 10 (June 7-Thursday): home

- went to PCP and received pain management
- finally able to sleep more than an hour at a time (first since surgery)
- nausea and vomiting improved

Day 11 (June 11-Friday) : home

- nausea
- burning pain in head
- feeling of fluid "slooshing" when I turn my head
- pressure along one side of head
- pain is worse upon sitting or standing

*note: all of these symptoms have been passed along to my neurosurgeon's nurse