My “plane” landed today. I got a call from the neurosurgeon, and he said that there has been a change on my MRI. What specifically, I’m not sure. He didn’t elaborate, it’s hard to do over the phone when he can’t show me. He wants me to have a cine MRI which measures the flow of cerebrospinal fluid to check for blockage.
If you’re new to my blog, I’ll summarize. Last summer, I had an MRI because of my lupus, to check for lesions on my brain that can be caused by lupus. That came back negative. But the report found that I have Chiari Malformation, a brain condition where the back of your skull doesn’t grow quite large enough to accommodate your brain, and so the bottom of your cerebellum herniates down into the spinal column. The #1 complaint are the really bad headaches it causes, other symptoms are largely neurological and consist of tingling, numbness, loss of balance, forgetfullness, issues caused by brainstem compression like sleep apnea, heart palpitations, fluctuating body temperatures, and digestive issues. It becomes even more complicated when your section of herniated brain blocks the flow of CSF fluid. This can cause brain damage, increased intracranial pressure and intracranial hypertension, and a pocket of fluid can form within the fibers of the spinal column, called a syrinx. It forms because the trapped fluid has nowhere else to go. A syrinx can also have it’s own set of symptoms, which include tingling, numbness, loss of coordination, and eventually paralysis if it isn’t drained. I’ve had really bad headaches for the past 5 years, and doctors just deemed me a “headache person”. I too believed that there was no real cause. Perhaps it was migraines, or tension headaches. Coincidentally, I had read about chiari months before my MRI, and thought, “hey, those symptoms sound like me” but obviously I didn’t press the issue, because doctors look at you like you’re nuts when you go in their office already diagnosing yourself. Needless to say, when the Chiari came up on the MRI, I wasn’t really surprised, it was more of a “Holy shit, I was right.” I went on to see a neurologist, which I learned is a mistake for Chiarians. Neurologists don’t really know much about chiari, and they tend not to ever treat it aggressively. He wanted to just monitor it. I wasn’t OK with that. I was in so much pain all the time, and no one was doing anything about it. From there, I basically went over his head and saw a neurosurgeon. The guy seemed to know his stuff, but he was in a hurry, and only spent 15 minutes talking to me. He told me that surgery is based on symptoms, which I have, and to come in and get it done whenever I felt like it. So from thereon out, I planned the surgery in my head, talked to other people with chiari, and just readied myself for the biggest undertaking of my life. It terrified me, but it also terrified me not to have surgery. And in the mean time, I’m trying to put my lupus in remission with a new medicine. About 9 months went by, and in July I went to see a neurosurgeon who is a specialist in Chiari Malformation and Syringomyelia (syrinx). He did a neurological exam which involved a lot of poking and prodding, and bending my joints. I passed. I felt all the pin pokes, the tuning fork vibrations, the cold metal. Reflexes were good. He looked in my eyes to check for intracranial pressure. Nope. We looked at my MRI together. It was an MRI not of my whole brain, but of the bottom half of my brain and my cervical spine. In short, I heard “Your cerebellar tonsils (yes, that part of your brain is called the tonsils, nothing to do with your throat tonsils) are low, but that does not indicate chiari malformation. Your syrinx is actually hydromyelia, a pocket that occurs during childhood growth and sometimes still appears in adults. Your headaches occur because you have a long thin neck and it’s putting a lot of strain on your muscles to hold up your head” I was shocked. For a whole year I was readying myself to hear “You need surgery, how does next month sound.” I was in disbelief, but I was also angry. Why couldn’t someone have told me sooner? I had a lot of mixed feelings. He ordered another MRI I think just to make me feel better, and to make sure he was doing the right thing.
I had the MRI last week. It was a pretty quick 20 minutes or so, and no contrast. And today, I get the phone call. He missed something, apparently. Now I’m right back where I was. Thinking about surgery, and shaving my head, staples, and worrying about how my lupus is going to react, and the potential for infection. I’m back to imagining the whole process. I’m back to wondering what happens if they fuck it up, and wondering if I’ll need more than one surgery. I’m back to wondering how long it will be before I can get my life back together again.
That month and a half of thinking I was misdiagnosed was a nice vacation.