Quote:
Originally Posted by Melissa21
Hey guys. My name is Melissa and I'm 22. I was diagnosed with having a chiari malformation type one of 10mm in February of last year when I had a cyst decompression surgery related to an arachnoid cyst I have. My doctor told me that if I never had any symptoms, we wouldn't have to do anything with the chiari. Well, around January, I started getting more frequent headaches at the base of my skull. I didn't really think much about it. Since then however, they've only gotten worse. Now I'm in pain constantly, along with having hand tremors and dizzy spells. The pain gets so severe at times I can hardly stand it and have to rely on pain medicine to take the edge off(which I hate taking!). I saw my neurosurgeon a couple of weeks ago and he is not wanting to do the surgery if at all possible because when he went into the back of my head for the cyst decompression surgery, I ended up not being able to walk right and had to use a cane and go to physical therapy for 3 months before things were better and that surgery didn't go into my skull like the chiari surgery will.
I totally understand his reservations. He sent my to a neurologist who I saw today, who kept trying to tell me I'm having migraines (even though the chiari is visable on the mri and I've had migraines before and know what they feel like). He mentioned that the solution he liked the best was shooting pain blockers into my neck to deaden the pain. My issue with that is that its not going to take care of the dizzy spells, which worry me since I drive. I'm also worried cause I'm on a bit of a time table here. I'm a college student, so this needs to all be done(including the rehabilitation if its needed) by early August.
Has anyone done the pain blockers? I just really don't want to waste my time doing it if its not going to take care of everything. My neuro I think is trying to avoid surgery which I love him for, but I'm frustrated and worried that this might just be a waste of time if it doesn't deal with the dizzy spells.
My neuro also told me that its possible the surgery won't fix anything. Basically I need lots of input and help! Please!!!!
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I would definatly get a second opinion if I were you. First of all, usually anyone with Chiari is told to stay away from injections unless its a last resort. I have ACM with an 11mm herniation and I am currently in the "what are we going to do about this phase". My primary care manager referred me to a pain management clinic to get injections in my neck/upper back to combat the constant pain but when I mentioned it to my neurologist, he said NO WAY! He said if someone IS going to do it, it NEEDS to be an expert or they can cause some SERIOUS problems.
Also, I think you are dead on with being worried that they are only treating one of your symptoms. More often than not, when they only address one symptom they are just trying to give you an answer (whether it's actually whats going on or not.) This might just be me because I have military health care where they try to get you in and out without really caring all that much but I would raise that question if I were you. Especially since your other symptom effects your safety! Anyway, i hope that helps!