doctors ignore chiari diagnoses

[mommaof2aspies]

8 yrs ago after being rushed 2 hospital bc what looked like a stroke in 26 yr old mom with history of migraines & asthma. Found out I had something called Chiari 1 Malformation. Now after a ct scan, mri, spinal tap & days later a blood patch bc my spinal fluid wasnt closing the hole. Dr said you will never have problems its mild but I have scoliosis with a 50 degree curvature. Now after all this 8 yrs later doctor still want to dismiss my problems. I still get severe migraines, some days can barely walk & in extreme pain also developed seizures in the last 4 yrs. I continue to try to work but its becoming more difficult in the last 4 wks ive missed 2 wks of work. Doctors run test on everything else they come back negative I point out my chiari again they prescribe more meds currently on 7 bc my colon is having trouble functioning, seizures, migraines, depression, panic disorder. Please help can't get disability & have no insurance bc can't afford & state won't give it to me. I pay 4 everything out of pocket... Help??? Any advice on what to tell doctor?

[mommaof2aspies]

Thanks everyone.. Yes I was diagnosed with scoliosis @ 18 when a chiropractor tired to correct my back curvature & I got major migraine & continue to get them. The back specialist went no further. Then at 26 after years of drs trying different meds for migraines with no success @ 5 am I woke up to one of my coughing fits & head felt like it was going to explode, couldn't walk or talk, trouble breathing and was in and out of conciousiness. So I was rush to hospital with possible stroke or aynorism. So they done a lumbar puncture found blood, done ct scan blood vessals in brain very small, done mri found 3mm chiari, done another lumbar puncture it was clear. So after that I had a major migraine and 2 days later I had to have a blood patch bc hole did not seal. This started my battle 8 years ago. I now take 12 pills a day to try to control all of the things going on with my body. None of my doctors like I said want to think its my chiari.  

[linnielou232]

I have to tell you Selma is our specialist here and will lead you in the right direction.  I actually went with my daughter today because she was getting a ct scan and I went right up to him before doing the test and demanded they put on her record's to look for Chairi Malformation.  If they are not looking for it they won't see it.  As Selma states there are a lot of dr's out there that don't know about Chairi so you need one that know's.  I feel your pain and flustration because we that have Chairi have went on some long journey's to find answer's.  Keep being persistant and you will find your answer's.  Best of luck.

[Rylanesmom]

I agree with Selma chiropractors and back specialists can cause more issues if your brain is the issue.  Selma has been through the chiari ringer and is a wealth of information:)

[selmaS]

  Hi...do u also have chiari....or know about it to suggest a back specialist?
Those of us that have been thru this process know she needs a chiari specialist...

  We appreciate ur attempts to offer help.

[tammie250]

go and find a back specialist

[selmaS]

  Hi and welcome to the Chiari forum.

The issue r u having is u r dealing with Drs that do not know how chiari can affect a person that has it....u need a true chiari specialist, they r out there, but u may have to travel to get to one....we have a list of drs compiled by the members here, not all names on the list r true specialists, but have successfully treated chiari- U have to research the dr and visit a few to see which one is best for u...the list is not meant as a referral-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  We r glad to welcome u, but not happy for the reasons u had to seek us out.

   "selma"