meniere's

[suzanrobinson]

I was diognosed with ACMtype 1  17 yrs ago.been coping on my own. Had to have neck surgery last year, do to stenosis.It was nessary do to compression of spinal cord and vertrabal arteries. Now do to vertigo, the ear DR diognosed me with meniere's disease. could this be one complecation of the ACM.?   Neurogist and neurosurgen said ACM was mild and not to worry about it.

[selmaS]

  Wishing u luck....keep me posted...

It does seem it may be a Chiari related eye issue as so many of us do have visual issues.....not sure where it begins or ends.

Hope u get the referral and answers.

[suzanrobinson]

went to get my eyes checked yearly deal.Eye Doc had fit told me to call reg doctor. I have a occular cortex problem. I figure it is just another symptom of the Chiari showing up. He called my doctor, so I 'm going tomarrow and state my case on why she needs to refer me to OU. cross your fingers that she listens to me I downloaded some info  and printed itout to take to her. cuz OU won't take me without her referall. wish me luck and full steam ahead thankyou for all your help and support Suzan

[selmaS]

  Glad u got someone to take a look at u and  ur MRI's/....keep me posted.

[suzanrobinson]

I think OU Neuroscience center will take me if I can get my reg DR to refer me It is at Oklahoma city. I called them and got the info I need for the DR to send to them.  You are wonderful .Suzan

[selmaS]

  I understand ur hesitance and agree none of us should be lab rats, but there are Drs out there that do know more about Chiari as they do research it and work with nothing but Chiari patients....that is the type of Dr u need....

Keep me posted on ur Dr search.

[suzanrobinson]

The NS who done my neck surgery was irate that my  regular DR had not put in my files that I had Chiari. I told him I was well aware that I had it,but didn't dr for it any longer.  I wasn't going to be a lab rat for any more of their Idea's that didn't work. They gave me some meds that dropped my blood pressure and almost killed me. thats why I quit doctoring for it. I will check your list of DRS  Thankyou  I mean it from the bottom of my heart    SUZAN

[selmaS]

  The only way to find out is ask some questions, if the staff answering the phone ask u to spell Chiari that is a given that is not a specialist....

See our Drs list and use it as a tool to research Drs as it is not a referral nor an endorsement.

http://www.medhelp.org/health_pages/list?cid=186

[suzanrobinson]

Thankyou all. for your support.  at  this point I'm pretty fed up with dr's. I don't know if Wichita ks has a Chiari Dr.   Does any body have any idea? the local family pactice dr's in town just look at you funny when you bring it up that you have ACM,   Like "Oh really, here's a nut case" . I just don't know what to do any longer.

[selmaS]

  Hi and welcome to the Chiari forum.

I really resent Drs using the term mild in describing Chiari, when all they factor into that term is the size...not how it is affecting us or do they look to see if we might have a syrinx or CSF obstruction or ne other related condition.

Find a true Chiari specialist and get tested for ALL related conditions,

Know u r not alone and we will help u the best we can so u understand this and can help educate ur Drs....

[geargarage]

I just made a post kinda asking about the same thing!! My radiologist reported "mild cerebral ectopia". Why mild? Why not just say __mm? To me, mild indicates a qualitative measure, which for us chiarians, is not what determines the degree of severity.

suzanrobinson, IMHO i would demand to see a chiari specialist.

[desertstorm2009]

Hi Susan...
I cringe to hear neurologist call our Chiari "mild". How many of us have heard that? It's not the size of the herniation so much as it is the amount of crowding and subsequent blockage of your cerebral spinal fluid flow. It may be a good idea for you to get another opinion (a neurosurgeon), one who actually treats this condition. Good luck dear :-) Lisa