My Surgery Story

I would like to go ahead and post a proper update regarding my surgery while I am at least a little bit conscious.

Monday night:

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.

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.

Checking in

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.

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. 

The anesthesiologist

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.

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.

In the OR

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 did me a light sedation so I don't remember the NS coming in. That's a good thing. 

Waking up

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.

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.

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 embarrassed for him to see me like that. 

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.

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.

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!

Moving to a room

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. 

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!

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.

During the night

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.

The next day

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.

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.

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.

So, I took yet another walk down the hallway. Alone.

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.

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.

Pain control

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.

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.

Walking

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.

 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!

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.

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. 

Lunch

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.

Life at the hotel

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.

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.

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.

Back at home

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.

 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.

I talked to her about the pain and how I wasn’t managing it well, despite the muscle 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.

Days 5&6

 The neck spasms are bad, but the sharp, shooting, burning pain and pressure in my head is worse. I can't even describe it. 

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.”

What to do from here
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.

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.

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.

None of the people involved in my 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.

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.

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.

Day 7
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. 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. Pete talked to the nurse as well and despite the fact that their website regarding Chiari surgery says that “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).” 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. That night, I broke out in hives. The steroids perhaps?

Day 8

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.

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.
Nope.

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.

Day 8 turnd out to be a blur of 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.

Day 9

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.

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.

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.

I did everything they told me to: lost weight, ate an anti-inflammatory diet, cut out caffeine and processed foods, and stopped pain medication 2 weeks prior to surgery. They haven't done much to hold up their end.

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. 

Day 10

Some concerns:

- the horrible pain and pressure

- the steroids made me break out in hives but the nurse did not give me an alternative or even tell me to stop taking them (I did)

- the nurse did not call me back when I called and said we had run off the road and asked if we could come in a little later-she had the receptionist do it and told me to return in a week (for all they know, I am dead or in another hospital somewhere)

- vomiting and nausea are still here but pain control does help them

- feeling of fluid and swelling at the base of my neck 

- occasional double vision 

- sweats and clamminess from pain

I hope to continue to improve but am definitely open for suggestions as far as to what do at this point.

Please excuse any typos and stuff.

pre-op

brushing my hair one more time

marking my head

flowers from a friend

day 4 

the beginning of the thrush-MUCH worse now (but grosser)

Day 14

Two weeks after my surgery, I returned to my NS. The pain and pressure had not alleviated. He gave me a nerve block there in the office which did help the tenderness, but did nothing for the pressure. At that time, he wanted me to do a wait and see approach again. If, in 6 days, the pressure and pain did not change, I am meant to return and go from there. 

Later...

I ended up back in the hospital a few weeks later and stayed there for a week. Finally, a blood patch helped the CSF leak that I had developed. My surgeon ended up taking very good care of me and I could not have asked for a better hospital staff during that stay. (I hope to never, ever have a blood patch again, though. That was terrifying.) 

Now, I am more then 2 months post-op and feeling a little better everyday. I am completely off of pain pills and except for some slight pressure in my head I don't have any problems that are surgery related. 

Unfortunately, I have not seen a decrease in symptoms. Hopefully, over the course of the next year, things will change in those regards. My EDS symptoms actually seem to have gotten worse, but that's a matter that the rheumatologist should be able to help...