I have an appointment to have a consultation with a neurosurgeon. My neurologist isn’t helping me, he’s just giving me pills, and I don’t want pills. Chiari and syrinxes only gets worse and I feel like I want to take care of it before it becomes a more serious issue, like paralysis. Not to mention the fact that I am never comfortable. I have a headache nearly all the time, and when it gets bad I feel pressure in my skull and spine. I can only stand up or lay on my side. And eventually even those positions induce a headache or pressure. I have a hard time watching funny TV programs because laughing gives me a headache. I feel like I stifle my laughing now because of it. I don’t drive because I can’t turn my head to look over my shoulder without consequences. Even sitting in the car or sitting to get my benlysta infusions hurts. You get the idea.

This particular neurosurgeon isn’t within the network on my insurance, so the visit isn’t covered. The appointment is next Thursday, and I’m not sure if I’m gonna go yet or not. I could cancel it, and try to get a referral from a doctor to go see a surgeon within my insurance. But at the same time, this particular surgeon was recommended to me by my endocrinologist, whom I trust. So I haven’t decided what to do yet. There is another neurosurgeon who I’ve been interested in meeting since I found out about my Chiari Malformation, and he is covered by my insurance, but the other office already has all my MRI films. I’ll sleep on it. $375 is a lot of money.

If the appointment, with whichever doctor, goes the way I want it to, he will recommend me for endoscopic neurosurgery, and I hopefully won’t need a spinal shunt. I’ll have a smaller scar (don’t care about how it looks, just how much muscle I have to rehab, and less scar tissue, since scar tissue can cause symptoms again) and the recovery time will be faster than traditional surgery, I hope. Also, I’d rather get it done sooner than later. I’m not good at waiting for things that make me nervous. I’m a ‘get it over with’ person.

As I’ve probably said before, my neurologist doesn’t want me to have surgery because of my Lupus and Addison’s. He’s waiting to see if the Chiari progresses, but the symptoms have me by the balls right now. I feel like I can’t do anything. I don’t know what that guy wants. I can’t be suffering just because I have other issues that may complicate the recovery process. The pain is so bad, I’m willing to go through a rough recovery just to eventually feel better. He only spends 15 minutes per appointment with me, so I don’t even know if he gets how bad it is. I’ve tried to explain it, but it seems to fall on deaf ears. Maybe he thinks I’m just being dramatic. I wish I was. 

There is also the risk that surgery won’t help me feel better at all. But I won’t know til I try. I just know that pills don’t do shit. They don’t move trapped spinal fluid that is making my skull feel too full. They just turn me into a zombie. And I’d rather be in pain than be a zombie.

For those reading who aren’t familiar with chiari surgery, it would involve removal of a section of bone in the back of my skull to allow more room for the flow of spinal fluid and hopefully the recession of the cerebellum so it is no longer herniating into my spine, and in some cases compressing the brainstem, causing a lot of ‘homeostasis disruption’ type symptoms. In some instances this is enough to also drain the syrinx, the pocket of fluid that is trapped in the center of my spinal cord. Sometimes though people need a shunt placed to drain the syrinx. Some surgeries require a tissue patch placed at the back of the skull, which is synthetic, graft, or bovine.

As hard as it is to deal with, I find it fascinating. I am extremely curious to know what my surgery would entail specifically. Not that it doesn’t terrify me, because it does, but I’m ready for anything. I’m really optimistic.


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