Well to start at the beginning, I always had headaches...they worsened with certain activities....I would get dizzy and also vertigo from time to time....visual disturbances...and drop attacks.
I had up and down weight issues and found it was due to an auto immune thyroid condition which may be related...as well as joint pain and issues which are now that I know due to me also having Ehlers-Danlos which is also a related condition.
My first DX was of tethered cord.....and I was scheduled for surgery to de-tether it, but my Drs re-grouped and decided I would benefit more from the PFD surgery which I had in May of '09.
It was a very slow recovery for me with so many other issues/conditions going on....but well worth it for me.
I also have very low BP....it was always like that for me.....sleepless nights were an ongoing thing....
Wait to see what this Dr tells you....then formulate questions around what he says...as there is no way to be prepared for what you may be told.....I did not expect the EDS DX....I knew I had tethered cord b4 going....but no idea about a retroflexed odontoid and baslar invagnation and all the things that affect those with Chiari....I did a lot of research and knew what my NS should be looking at so I knew 1- he was well experienced and 2-the type of Dr I wanted.
There are many Drs willing to do this surgery without having a full understanding on how it can and does affect us as well as how the related conditions can be triggered due to having surgery.
I do have a journal on my profile page and it is full of info b4 I had a Dr and after and thru my surgery and recovery....feel free to read it.
Hi and welcome to the Chiari forum.
I can give you the names of Drs on our list for your state.....the list is meant to be used to research the Drs and not meant to be a referral nor an endorsement of those listed. Our lists are compiled by the members here of Drs they have been to, treated by and liked. It does not imply they are all true Chiari specialists.
MINNESOTA
Dr. Mahmoud Nagib
Neurosurgical Associates
913 East 26th Street
305 Piper Building
Minneapolis, Minnesota 55407
Phone 612-871-7278
Fax 612-863-8531
Dr Nicholas M. Wetjen, M.D.
Mayo - Rochester, MN
Neurosurgery & Pediatric and Adolescent Medicine
This should give you a place to start and if you want to ask any questions, I had my surgery in May of '09 and am doing really well and am so happy I had
the right Dr and had the surgery as it has improved my life.