Let me catch all of you up quickly with my "zipperhead" story. Please know I am totally open to questions, and no question will offend me. I have been connected with people all over the country because of this surgery, and I LOVE talking to people. Ok, the story... Since high school I always had frequent headaches. I figured it was just part of allergies or lack of sleep or some other very reasonable explanation. However, March 2007 while I was out salsa dancing with a friend, my head starting hurting worse than it had before and it hit me fast. I didn't say anything to him that night, but that was just the beginning of this crazy rollercoaster. In the 2 1/2 weeks that followed that pain continued to get worse.
I followed up with my normal doctor in Nashville, TN and she began trying numerous migraine medicines with me. Nothing was helping, and I was miserable and in constant pain. The pain was predominately at the back of my head and was beginning to make its way down my neck. But there was definite pain all over my head. She decided she wanted to send me for an MRI of my brain to rule out a tumor, and said she thought my sinuses could be blocked. I wasn't concerned at all and proceeded to my MRI appointment.
The MRI was one of the most excruciating experiences. I thought my pain was pretty extreme before I got pushed into the "tube" haha, but I was mistaken. The constant tapping and vibrating sent me through the roof. It was the next day that I got the call. The nurse called to reassure me that I did not have an aneurism nor a tumor. However, she said it appeared my "brain had shifted," and I needed to come back immediately for another MRI stat. It was after the second MRI that it showed my cerebellar tonsils were herniated 8mm. (Basically, my brainstem was being pushed down into my spinal canal.) Obviously, this is not something that is positive, so I was sent to a neurosurgeon the next day.
This began the long and frustrating process of finding a surgeon that for starters even understood my diagnosis, and secondly would do anything about it. Chiari malformation is not something that many surgeons are very familiar with, and even those that are tend to shy away from the surgery. The surgery is a newer surgery, and still very controversial. The first surgeon confirmed the diagnosis, but said my symptoms were unrelated and that I was simply suffering from migraines. He proceeded to to refer me to a neurologist. This doctor was just as frustrating and said it was only a migraine and gave me medication.
First, let me explain what my symptoms were at this point. Besides the constant and pretty intense pain in the back of my head and neck, I was getting dizzy and not having very controlled balance. Also, I was getting numbness and tingling down both of my arms. Not typical migraine symptoms. The medicine did nothing to relieve my symptoms, just made me incredibly sick-the first morning I took it before class I spent the whole class running in and out of the room throwing up. He tried several other medications and then I was just done with him. I returned once more to the same surgeon and when he told me he would not do the surgery and he did not think it was related, I told my mom I was not going back and we had to find someone else.
The next one we tried was in SC. He also confirmed the diagnosis but was not a believer in the surgery. So he sent me to a pain managment doctor to get the epidural steroid injections. First of all, I will never again have an epidural in my spine. That was awful. And did it help at all? Nope. I was then done with both of those doctors haha. I was getting to my wits end. I had started the PTA program up in Nashville at the end of May and was making it only by God's grace. Class was everyday 8-4 and I would study a little when I got home, and then take my pain pills so I could sleep at night. I needed answers.
Those answers came through my mom. She was constantly researching my diagnosis on the internet...And she found several different groups. However, she found a few people that had had the surgery and loved their surgeon. AND he was located in Hendersonville, NC- Dr. Michael Rosner. At that point I did not see any reason NOT to at least try him, there was no way possible that he could be any worse than the first three and definitely could not be more frustrating to me. So I called and made an appointment for July 3.
That morning, I was just praying as I drove up that he would tell me ANYTHING different. That he would believe what I told him, and not try to just medicate me. I didn't want to live on pain pills forever, and at that point, that was exactly what it was looking like. Was I in for a surprise. When he came in I expected the typical questions, and him spending about 15 minutes MAX with me. Oh no. He sent me for more MRIs that were done according to his protocol. When I returned, he looked them over and then came in to give me an extensive neurological exam. After asking me tons of questions about my symptoms etc., he took me back to explain the scans with me. He told me that my brainstem was down even further than any of the other surgeons had told me. He also said that with how my symptoms were progressing, (by this point my legs were giving out on me-I would be walking one minute and on the ground because I couldn't feel my legs the next) that surgery looked like the best option and the sooner the better. The longer I would wait for surgery, the more I increased the risk to not be able to clear up all the symptoms and to have permanent damage. That was all I needed to hear. I asked when he could cut me open :)
We filled out all the necessary paperwork that morning, and made the extra appointments and then scheduled the surgery for the end of August. I had a complete peace about this man that was going to be messing with my brain and would have my life in his hands. I knew that he was exactly who the Lord had showed us, and honestly I wasn't worried about the surgery. The week before I went in for the surgery, I admitted to one guy I was nervous about what could happen and talked a little to him about it-after that, I was ready to go. I knew the Lord had control of the situation so whatever happened there was going to be a reason for it. August 28,2007 I went under and Dr. Rosner did the brainstem decompression surgery on me. He removed the cerebellar tonsils and opened up the foramen magnum so that there was more room (he used a bovine pericardial patch haha MOO!). He also found that my C1 vertebra was underneath C2 (not normal) so he had to remove the posterior aspect of C1 to correct the problem.
I woke up from surgery and that day I could tell a difference with my pain. Of course it was killing from him drilling through my skull etc., but it was a different pain. One I was very thankful for. 5 days in the hospital and I was home. Two days after that a friend was coming to pick me to hang out at his house and that whole week I was doing things. It was like I was a new person, and Dr. Rosner knew exactly what he was doing. I was back at school less than 2 weeks after surgery (he wanted me out for six, but I don't stay down too long or well at all haha). It appeared everything was fixed!
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