Neuro Non Believer

[wingnutt]

Why is it that neither my Neurologist nor my PCP believes my Never ending Migraines and head pain are due to CHIARI?!! Have tried a lot of different Meds, only short term results. Now I'll be trying Botox Injections next! Yeah more Toxins in my body!! Truthfully you guys, I don't know how much more I can deal with the head and neck pain anymore!!!!! I'm Tired! Getting Really sick of meds and No results but adverse effects from them! Any suggestions or thoughts? I've been having migraines since I was 8-9 yrs old and will be 50 in May 2016. It's getting Worse now. Migraines are almost Non Stop everyday! Sorry to Rant just need to vent!

[selmaS]

  Goodness...are all those things supposed to be "normal"....wow .....so sad how these Drs treat us.....

Did you have a CINE MRI to see if you have a CSF obstruction or any other abnormality ?

The cysts and pituitary glad tumor are not uncommon for those with Chiari...not sure why.but I know quite a few have had issues like yours....

Hang in there and keep pushing for answers....and getting the right Dr will help/

[wingnutt]

Thanks Selma!! I appreciate that. I'm at my breaking point at the moment. I don't know how much longer I can endure this Pain! Not only Chiari but I also have Pituitary Tumor, Arachnoid and Pineal Cyst and Fibromuscular Dysplasia of Carotid and Vetebral Arteries. But these Docs don't feel any of these issues or Anomolies are causing my Migraines and Pain. Can ya stand it!! My Chiari is 9 mm herniated with pegged tonsils.

[selmaS]

  Hi and welcome to the Chiari forum.

The reason and problem is the amount of info taught in med school....most Drs get approx 5 to 20 minutes on Chiari....so it is not well studied....

Things are changing and  until more time is spent on Chiari in med school we need to rely on Drs that specialize in Chiari and ALL related conditions.

Many of us have been thru what we have dubbed "The Royal Chiari Run Around" ...they send us to this Dr, for that test and for this med.....all until they  agree we have Chiari and yes it can be symptomatic.

You need to find a true Chiari specialist.


MASSACHUSETTS

Dr William Butler
Mass General Hospital
Boston, MA

Jean-Valery Coumans, MD
Mass General Hospital
15 Parkman St.
Boston, MA 02114
Tel: [phone]
Fax: [phone]

Dr. Carl Heilman NS
Tufts Medical Center
Boston, MA

The above names are not a referral nor  an endorsement....please research the Drs and use this list as a stepping stone.

I too have had migraines and pains as long as I can remember and was not DX''d until I was 48...had surgery 2 months b4 I turned 50....a lot has to do with MRI's and availability of their use....and then what to do with what was found,,

No worries rant or vent all you need to that is why this forum is here.....