Chiari Malformation Community
Is it getting worse?
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Is it getting worse?

I'm new to these forums. I only really signed up to read other posts about chiari malformation. I got diagnosed with ACM type 1 over a year ago now. I seen a neurosurgeon when I was having really bad migraines but he didn't seem to think it was anything important. Since that appointment(about 8 months ago) my headaches have gotten worse and I'm starting to throw up a lot with them and just feel generally nauseous. My balance is really bad and I trip and stumble and fall to the side all of the time even when I'm just standing still or getting up. I have double vision and blackouts and I get extremely dizzy (and it could last up to like 5 minutes being totally disoriented). But the most troublesome concern that just originated in the past couple of months is some mornings I wake up and my neck .. I just can't move it. Sometimes it takes up to like 10 or 20 minutes for me to be able to move my neck properly. it's almost as if it is temporarily paralyzed which really scares me. I don't know if it is related to this or not. Does anyone else have these experiences? and should i see my neurosurgeon earlier? I am getting a neurology appointment soon, as well.
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1409440_tn?1281476264
Oh by the way, I have a mass in my spine of 9mm or something like that, I'm not exactly sure. And have quite a bit of cerebral spinal fluid built up.
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620923_tn?1416285879
Hi and welcome to the Chiari forum.

Many of ur symptoms sound like chiari symptoms and if u r getting new symptoms then yes it is getting worse...it is changing ur quality of life.

Going back to a NS that did not give u more info may not be a help...u need to see a true chiari specialist and be sure  that u do not have other related issues going on as well.

The mass u mention is it a syrinx?....a cyst that fills with CSF fluid?

Here is the link to a list of drs u should research and keep in mind u may have to travel as we r all not lucky enuff to have a chiari dr  in our area.

U deff need to be seen by a chiari dr...do u have copies of ur MRI and the report...if not request them and going forward always ask for copies of all testing even blood work.

"selma"


http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
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1409440_tn?1281476264
They never told me if it was a syrinx, but my doctor told me not my neurologist or neurosurgeon so I don't think she knew ALL that much about it.

I can get copies of all those things, but all of those doctor's on that list are all out of the country as I live in Canada. So i will have to see what the neurologist says, and if he says it is Chiari related I would definitely make the trip, the only thing is in Canada we have free healthcare where-as they don't.

Thanks so much though, you really helped!
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620923_tn?1416285879
There is a link in the Health Pages to a list in Canada...a few drs, but we r trying to build that list too!http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186
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1409440_tn?1281476264
Oh okay, great. Thanks! :)
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