First appointment with NL

[shaemika89]

I have my first appointment with the NL tomorrow. Does anyone have any suggestions about what I should ask the doctor? I really need everyones help.Thanks

[selmaS]

  No worries...good luck and do keep us posted...and know, not all NL know chiari, so it is possible to have a visit go not the way u would expect...but hang in and keep pushing if that should happen, I pray it will not : )

"selma"

[shaemika89]

Hi...I am going to a neurologist, my doctor suggested that I go to a neurologist first. I am going to at least get a first opinion.My primary doctor is who ordered an MRI. Since then, I have changed doctors, he is the one who gave me the referral to a neurologist. I have only had a brain MRI.Therefore, I really hope that the neurologist will order further tests. Thank you for the info!!!!

[selmaS]

  Hi...r u just going to a neurologist? Once u r dx'd with chiari u should be seen by a NS(neurosurgeon)...u also need a well informed NL...so u should ask what they know about chiari...but many times, they do not know all that much.

Have u had all the testing?...A CINE MRI, and MRI's of ur cervical spine, thoracic, and lumbar spine....the lumbar MRI is used to look for tethered cord and a syrinx...and all MRI's should rule out a syrinx in each area.

Many with chiari could have autoimmune issues as well as connective tissue disorders..so u should be checked for them...and sleep apnea.
In the list of disorders u want to rule out...MS, Lupus, Lymes.....Hashimoto's thyroiditis, Ehlers-Danlos syndrome,DDD, scoliosis,bulging disks.....

The NL should do the testing and all the dxing and then send u to a NS.

We do have a list of ?'s for the NS-http://www.medhelp.org/health_pages/Neurological%20Disorders/Questions-for-a-Chiari-NS/show/1155?cid=186

Good luck
"selma"