Blood supply or csf fluid impingement?

[Guest guest]

On Thu, 3 May 2001 10:57:46 EDT Ladydi464@... writes:

Hi ,

Have you had decompression surgery? I believe mine came from

compression on the brainstem before surgery. I still get a little dizzy

when

I change positions to quickly, but no where near the episodes I had

before

surgery. This was one of the main reasons I went for surgery and went for

the

second surgery. It effected me both times.

Take Care,

in Fla.'s space coast

,

You are right. If this kept happening I would have to opt for the surgery

for some life-stabalizing measures. So far, meds. have helped with most

of the symptoms. And, the others it has not helped me with are

controllable or adaptable. But, there are days!! when I just want to

crawl in a hole. And, yell, go away chiari, as we all do here. And, as

you can guess from these comments, no I have not had the surgery yet. I

am sure that I will probably have to one day and soon. I am just trying

to hang in there. On the waiting lists right now. And, that could even be

a year they say. So, I am in no hurry. God's timing.

I agree, though, when you begin to do stuff like this, you need other

intervention besides meds. And, who knows that some of the meds. I am on

are causing this. I am on 4 now daily. This may not seem like a lot to

some. But, for me who has always been med. free until a few years ago,

this seems like a lot. I am not on any pain medications, though, and I

consider this a miracle of a thing, considering the pain we go through.

(except for an as needed for when I get a real bad headache thing,

usually 2 days or so, or an out of control episode - rare)

The preventatives seem to take the edge off. I still hurt though, just

not enough to freeze me up. If I go off everything, I get like a person

who cannot move. That is why they are trying to call all of this

fibromyalgia. But, I wish they would acknowledge for Chiairan's that ACM

is the problem. It at least validates it for us and makes us not to feel

like whining sickies that have nothing better to do than search our whole

lives for some sympathy or something. Come on!!!! I've got more going for

me in my life than to need pity. I just need someone to say. Yes, this is

your problem, and although we cannot do a whole lot sometimes, it is why

you are having these symptoms. You are NOT crazy! That would be so

simple.

It is not that I am ashamed of all the other diagnoses and all. (scared

of some of them, like myasthenia gravis or ms, lupus, cancers and tumors

and stuff) It is just not really what I have. They ALWAYS come out

negative. And, I have been worked up on about 10 other diagnoses. I gets

ridiculous, when you always come back to the ACM and sorda tell them. Ok,

this is what I have. Now let us treat this. Duh. And, it gets expensive

and time consuming.

And, about compression of the brain stem. I think you are right. And, I

have been studying the basilar and vagus nerves and such. And, now the

vascular systems of the base of the head and down through the foramen

magnum. I did not realize that a great deal of blood goes through there

too. Not just csf fluid. There can be more crowded than we realize. I

have tried to explain some of my feelings as if they (the numbness and

tingling) are nerves that run through there and get squeezed. But,

sometimes the symptoms are alleviated simply by repositioning. I think

these may be stopping blood to the areas as well as nerve signals. What

do ya'll think?

Thank You for responding,

in Ala.