As soon as I got home from my neurosurgeon's appointment, I went straight to the internet and tried to find anything I could about Chiari Malformation. Let me tell you, there isn't a lot. Anyone who has tried to find info about Chiari and the surgery knows that you pretty much find the description of the condition and the procedure. There wasn't a whole lot about post-op. I was fine with the idea of having surgery. I had gotten to the point in my life where I was willing to try anything to help the pain I was dealing with on a daily basis. I wasn't scared and knew everything would be okay. I honestly thought this was going to do the trick. The problem was, convincing everyone around me as well. I knew everyone would be worried but I honestly felt horrible knowing that everyone was so concerned about me.
August 23, 2012 arrived, and I was ready to go. I got to the hospital and was pretty much taken straight back to be prepped. There were a few hold ups so it took a little longer to get into and OR than I had expected. I believe my surgery started around 5:30 pm. Everything went well according to the hospital staff. I had a craniectomy, laminectomy of the C1, and some ligaments cut and cleaned up over the dura because they were extremely tight. Once I came to in the ICU, I was even getting up and going to the restroom on my own other than help with getting my IV pole. I had a lot of pain throughout the night but was told during one of my medication visits that I would be discharged in the morning. I remember the surgeon coming in and talking to me, even though I don't remember a lot of what he said, and was discharged around 8:30 am. I remember thinking to myself, "I thought I would be spending at least a few days here. I just had brain surgery and they are sending my home." I was still so out of it that I didn't even think to question them. I was just glad to be going home to the comfort of my own home.
The first 3 days home were good other than the pain. I took my meds and thought it will get better soon just as with any other surgery. Then Monday came. All of a sudden, numbness hit. I mean my entire body was numb. I called the surgeon's office and the nurse told me to try ice and rest. I did and it seemed to help a little that day. The next day, nothing helped. I dealt with it for 3 days until I finally broke down and my husband took me to the emergency room. I got treated ok until hours later when they heard back from the neurosurgeon who said it was "NORMAL" and then they started blowing me off. I knew my entire body being numb, not being able to feel hot and cold, burning myself and not feeling it, and everything else I was facing was not normal. It was horrible. I dealt with it as long as I could. I went to my regular doctor's office to see if they could get me in and they said that I immediately needed to go back to the emergency room and scheduled me an appointment for the following morning. In the emergency room, I told them all of the above problems plus the increasing pain. They switched my meds, called the neurosurgeon and yet again, "IT WAS NORMAL". At least this doctor believed the pain I was in and treated me with respect.
It was finally time to see my primary care doctor. She had been the only one who had truly believed me. She talked to me for a while and immediately ordered lab work, x-rays, and a new set of MRI's. I was so happy. Everything got done that day except the MRI's. I am an Army wife, and for those of you who are also, you know how Tricare works. The base we are stationed at doesn't have an MRI machine so I had to wait for an opening and travel about a half an hour to get it done.
The day finally came for my first post-op appointment with the surgeon. September 17. Yes, 25 days after surgery! That was yet another thing that didn't make sense to me. I only found out about when to take all my bandages off when I talked to the nurse about the numbness. They hadn't even told me if I had staples, stitches, or whatever. The best part of it all was, the nurse had the file right in front of her and she said it wasn't listed anywhere!!! I went in hopeful. Big mistake. As soon as the nurse practitioner came into the room, I knew that things weren't going to go good. After explaining all of the issues I had been dealing with, I once again heard, "NORMAL". I was livid. She had the gull to tell me that since I was able to get married and have a child, I must have had a lull in the pain I had experienced for all of these years. I swear that normal people think that just because people are in pain, they don't find a way to live their lives the best that they can. When I asked about my meds, she said she would see about getting a refill. After talking to the surgeon, she came back into the room. She told me, "I will give you one more refill on your pain meds and change your muscle relaxers. Not saying you do this, but taking more than stated or taking them more often than stated won't do anything. You really need to try to get off of these in the next couple weeks." If my husband hadn't been there with me in his military uniform, things would've gotten ugly! That was the point when I decided that as soon as I had my last follow-up to check my incision and stuff, I would be finding a new surgeon.
Immediately after waking up in ICU.
