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Old 08-20-2009, 10:32 AM
skiltrip skiltrip is offline
Junior Member
 
Join Date: Aug 2009
Location: New York
Posts: 7
10 yr Member
skiltrip skiltrip is offline
Junior Member
 
Join Date: Aug 2009
Location: New York
Posts: 7
10 yr Member
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Quote:
Originally Posted by skiltrip View Post
Hello everyone. This is my first post here.

I have a Chiari Malformation Type 1 (says 15mm on my charts).

My symptoms however, seem very mild compared to some things I read from other people. Basically right now I have headaches that come on mostly when I'm busy around the house. Comes on from bending down to pick stuff up, or pushing a vacuum around, or choking/coughing or a rough sneeze. The headaches can be anywhere from an annoying persistent ache to a pretty horrible pressure for which there is no remedy but sitting or laying down with my head back, low light, low noise, where it can fade. That's what made me want to see a neurologist and get an MRI. I wanted to rule out a tumor.

Another symptom is connected to the choking thing. I seem to trouble swallowing sometimes. I'm not sure how it is for others, but for me, it's like this lack of coordination that happens when I'm drinking sometimes. I'll just swallow wrong or not enough, or whatever it is, then I'll gag/choke pretty badly, and then of course the headache kicks in.

Another symptom isn't very often, and doesn't happen as much as it used to (it used to happen years ago when I didn't have the headaches, or did I, and maybe I just didn't notice because they weren't as bad?)... but my vision will blur sometimes. Sort of an unfocusing of the eyes that I can't correct. Again, it's one of those thing where I just need to close my eyes and wait for it to fade. Once or twice a number of years back it happened while I was driving, and I'd have to pull over until it passed. It usually passes within a few minutes, but still a very weird thing that I'm sure most people don't experience.

Other than that, I think that's it. I don't have a real dizziness, no passing out, no nerve problems, no insensitivity anywhere, nothing like that.

When I write it out like that, it does seem my symptoms are more significant than I seem to think, but definitely not as terrible as I've read from some folks who have ACM.

I'm going for a second opinion on 8/12/09, but my first neurosurgeon (who is renowned in my area) seemed to think surgery is a no-brainer (no pun intended) for my situation. He stressed the possible additional symptoms that could very well start manifesting themselves. The passing out and nerve problems, etc.

My biggest concern is... what if my headaches are not in fact anything to do with the ACM? I mean, I have no other explanation, and it makes sense, but of course I can't help ponder that.

Is there anyone out there who has had a symptom set similar to mine?

I have no surgery scheduled yet, as I wrote, I have a second opinion appointment in a week or so, and I'll see what that neurosurgeon thinks.
No replies, but that's ok. I've gotten a 2nd opinion from another neurosugeon who completely agrees with my 1st neurosurgeon and my neurologist, that surgery is very strongly recommended, and I should wait no longer than 2 months (6 months absolute max).

So I'm probably going to do the surgery at the end of Sept or beginning of Oct.
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