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Re: Swaying,Not Spinning!

Re: Swaying,Not Spinning!

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Posted by Karen on October 01, 2000 at 23:44:55:

In Reply to: Re: Swaying,Not Spinning! posted by Karen on September 11, 2000 at 12:03:06:

: : : My neurologist is pretty sure I have an vestibular disorder. I did have a vial infection right before the onset of my symptoms. I've always read that if there is a problem with the vestibular nerve, you would feel a true spinning sensation--one ENT told me that a swaying motion comes from the cerebellum.
: : : I am going on three years of this ride and have learned to live with it without any real answers. I am just 31 and want more out of life than this-my husband is great, but frustated just like me-we'd love to have children, but no way ,not like this.
: : : SYMPTOMS:Constant swaying,constant ringing in the ears, visual problems,balance problems(especially when I close my eyes-I fall backwards or to the right),facial numbness,right eye pain upon looking up that shoots a constant pain to the right occipital area of my head, headaches almost daily-sometimes migrain,right leg/sciatic pain,feet feel numb, neck pain, fatigue easily-mainly because my brain perception can't keep up with the motion of my body. I feel like I am still moving after any exercise or riding in the car, must lay down so my brain can catch up with my body or vise-versa, darkness makes balance much worse, and the floor feels tilted-WEIRD I KNOW, BUT IT IS REAL & CONSTANT. All tests come back normal and Chiari One Malformation & MS ruled out. Please respnd if any similarities-Thanks.

: : HI Paula, You sound a lot like me. I've been battling this for about 7 years now. It started with my left ear feeling blocked and went on from there. balance is a big problem for me now as are a lot of your symptoms. i've been tested for MS and a lot of other things. Finally I have come across a doctor who after a few simple tests in his office, thinks he knows the answer. He thinks I have a fistula or maybe an enlargement of the aquiducts(?) in my ear. There was also the possibility of an acoustic neuroma. Now I'm waiting for more tests and then a possible surgery to repair the fistulas. Hopefully that will ease some of the symptoms. From there I'll be able to tackle the remaining ones without the dizziness clouding the issues. Good luck to you

:
: HI. Like you I have suffered with much the same thing for about 8 years now with the symptoms getting worse all the time. I have been seen by quite a variety of specialist all of whom have been unable to tell me for sure what was wrong.
: Finally an ENT I was sent to see came up with the probable diagnosis of a fistula and tests were being done as a base line while I was waiting for surgery to repair the possible fistula.
: However there is now a new developement. A new report in a medical journal talked about a supra semi circular syndrome. I'm not positive on the name but the doctor now thinks that the symptoms bettr define the problems I am having. I go tomorrow for an MRI and some postural tests then hopefully some sort of treatment will be devised. Because it's so new I guess that might be a problem but I have hope.
: Good luck to everyone. Karen

HI again. I had my MRI and postural tests done. The results show I have missing bone. There should be a thin cap of bone (the temperal bone) over the superior semi circular canal. I have nothing but dura there. The doctor says this is a recent finding and so didn't have much information for me yet but will be investigating more. Meanwhile I am now waiting for surgery to replace the missing bone as well as patches to the possible fistulas. For those of you who are having trouble getting a diagnosis and the fistula theory just doesn't seem right this might be your answer. Karen



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