no one listens

[delta74dawn]

I'm being told by my NS and neurologist that my symptoms are not from the CM.  Occipital Neuralgia is what they are going with for my headaches.  They want me to have a steroid shot in my neck and physical therapy.  Is pt on my neck safe with having CM?  he said they will pull and stretch my head and neck to try and relieve the tension but from everything I have read it scares the crap out of me to even think of someone messing with my neck and head.  NS wanted to have a spinal tap done even after I pointed out that anyone with a CM shouldn't have that done and he told me my 3mm herniation is minimal and that it would be ok.  Thankfully the neurologist doesn't see a need for the spinal tap so it is not going to happen:) I was given Tramadol for headaches by the NS but they are not helping.  The Neurologist wants me to stop the med and start taking Gabapentin.  Still can't explain my dizziness so for now I will still look like I am drunk when I walk.  Neurologist is also sending me for a sleep study to check for sleep apnea.

[selmaS]

  Here are some Drs we have listed for those 2 states...keep in mind these names are not a referral nor an endorsement....they are only a starting point on researching Drs in these areas....if you find a Dr not on our list please feel free to send it to me once you have been to, treated by and are happy with the outcome .

OHIO

Dr. Lisa Lystad-Opthalmologist
Cleveland Clinic
9500 Euclid Ave
Cleveland OH 44195

Dr. John M. Tew, Jr.
Mayfield Clinic
Unv Medical Arts Bldg.
222 Piedmont Ave, Suite 3100
Cincinnati, OH 45219
[phone]

MICHIGAN

Dr Lynn Hedeman
Great Lakes Neurosurgical Assoc.
414 Plymouth NE
Grand Rapids, MI 49505
[phone]

Dr. Karin Muraszko
C.S. Motts Childrens Hospital
University of Michigan
Ann Arbor, Michigan

DR Richard Veyna
Head and Spine Institue of MI
West Bloomfield, MI

[delta74dawn]

My boyfriend and I joke about it now.  We shoot on a pool league together and half the time he is grabbing my arm so I don't walk into a table or chair or wall.  I'm sure people think I have been drinking but in fact I haven't had a drop of alcohol!  It's so frustrating.  

[delta74dawn]

I don't think that either doc is a specialist in CM so i'm going to continue to look for one that is in ohio or Michigan.  I have a disk that has all of my scans on them so if I find one I can send it to them form them to look at  and get a consult before traveling a long distance, i'm going to do that.  
I am now only taking the Gabapentin.  This will be my 3rd night taking it and so far it's not helping with my headaches.  

[HeathasaurusRex]

I can identify with you on looking like you're drunk all the time!  I worry that I look intoxicated when I have trouble getting out of a car or I bump into a wall.  I was at a wedding last weekend and staggered a little bit and someone jokingly made a comment about it.  Nope, haven't been drinking...

[selmaS]

  Hi...a LP should not be done with regularity on those with CM and if needed should be done with care to not draw the fluids too quickly as it can pull the herniation down further.....that said only if it is medically necessary should it be done.....and those with Chiari can have other related conditions that can make a LP necessary.

BUT it does sound as if your NS is not  a Chiari specialist.....

What meds are you on now? I went on Gabapentin and it did not do anything but disrupt my IBS issues....

A sleep study is a good idea....glad to see that test being done for you.

Keep us posted