Post-Op MRI's 9-26-12

Here are the latest MRI's. On Friday, September 28, I received a letter from my primary care manager stating that my MRI's came back abnormal and that I needed to take them to my neurologist and neurosurgeon. I was a wreck. I immediately broke down. I called my husband who came right away to pick my up to go get the images and results. I was so sure that the surgery was a failure. My mind was all over the place and didn't know what to do.  The results states that I had 2 nonspecific fluid collections in the subcutaneous soft tissues posterior to the posterior fossa and superior cervical spine. One measures 3.0 x 0.8 cm and the other measures 3.2 x 0.7 cm. These fluid collections are consistent with seromas. The herniation of the cerebellar tonsils to 6mm appear unchanged from prior. A stable focal posterior disc protrusion which effaces the anterior thecal sac but does not contact the spinal cord.

 

The bright white spots are the fluid collections.

 

A small central syrinx extends from C6-C7 measuring 1 cm in length.

 

 

The syrinx appears to have grown slightly but is luckily not blocking the CSF flow.

 

 

The results also state that I have reversal of the normal cervical lordosis. This is the natural curvature of the cervical spine. What gets me about all of this is that it says unchanged from prior. The problem is, other than the syrinx, the previous MRI's were normal. I am so sick of the word normal. I don't feel normal. Being in pain 24 hours a days, 7 days a week, 365 days a year is not normal!





Surgery and Post-Op

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.

10 day post-op

The wait seems like it has been so long. It has now been 10 days since my surgery and the bandages are finally gone. I have wait so long to see what it looks like. Here are the results. I got lucky and the incision ended just at the edge of my tattoo. I really wasn't happy about how much hair I lost, but what can I do!?!

5 days Post-Op

I got to take the big, outer bandage off today. I still don't know what to expect underneath, but it is a start.

Pre-Op MRI's showing Chiari Malformation and Syringomyelia.

 Here are the images that were taken in June and July of this year. Initially they only did a cervical spine and thoracic spine. When they found the Syringomyelia, the neurologist ordered the brain MRI to rule out Chiari. The funny thing is, the report came back normal.

This is my life

Welcome to my story! This road that I have been on has been a long one. I lived a normal life other than a few sprains from gymnastics and just being a kid. Then, when I was 11 years old, I broke my neck in gymnastics. I broke the hook of the C7 vertebrae in my neck completely off. I had to wear a neck brace for a few months and take it easy. As time went on, I starting feeling better. I was finally able to lose the brace and pretty much return to my normal life. I thought it was over. Then, when I was 15, the pain and muscle spasms started. The doctors blamed it on an old injury I had. I didn't think any differently so I went along with it. I then started experiencing migraines, which was also blamed on all the neck pain I had. I was given a couple of prescriptions and I went on with my life. I would have days that were so bad that I didn't want to do anything. That was not an option. As the years went on and the pain got worse, I went to doctor after doctor looking for answers. I kept getting blown or heard, "There is nothing wrong with you.". If they did listen, the answer was Ibuprophen and muscle relaxers. Nothing helped. It had gotten to the point where I felt like giving up. I kept going to doctor after doctor, taking whatever meds they thought would help, going to physical therapy, using heat and ice, and just anything that could possibly help. None of it worked. I dealt with this for 13 years!
 About a year ago, I finally found a doctor that after all those years, ordered an MRI. It came back normal other than the old injury. I felt defeated. I felt as though no one would ever believe me and I would be this way forever. A few months later, I moved, which meant a new doctor. That was a total waste of time. She was more into her self than the care of the patients. I explained to her that every other doctor I had seen had always said there was nothing wrong with me. She had the gull to say that I must not have broken my neck then. I was furious! Needless to say, that was the first and only time I saw here. After dealing with finding a new doctor and my insurance company, I found someone who would listen. In the first visit with her, she listened, ordered a whole battery of tests including MRIs, and prescribed some medications to try to get my pain under control. She also immediately submitted referrals to pain management, a neurologist, and a neurosurgeon just in case. A few weeks later I had the MRIs done and got the results back. It showed that I had a syrinx the length of my spinal cord from the C3-C7 levels. Finally an answer. I was diagnosed with Syringomyelia on July 2, 2012.
It was finally time to see the neurologist for the first time. After reading over the reports, he was convinced that the syrinx was the problem and got me in quickly with the neurosurgeon. He made it seem like the syrinx was huge and I would probably be having surgery in the near future. He wanted to do a brain MRI to rule out the Chiari Malformation. Since the radiologists didn't find it, he was convinced that I didn't have that. I got the new MRI and it came back...NORMAL! The day came when I would see the surgeon. He came highly recommended and seemed like a great doctor. On August 1, 2012, within seconds of looking at the MRI images, I was diagnosed. There it was, plain as day but yet the radiologists report said there was nothing wrong. We immediately started talking about the surgery. We both agreed that it would be the best route to try to improve my symptoms.  I scheduled my surgery and went home and thought about it all. Here all this time I thought I only had Syringomyelia but now I also have Chiari Malformation type 1. The reality was setting in that I would be having brain surgery.