In Love with Chiari victim - please help me.

[milaortiz30]

My fiance' has suffered from Chiari for six years.  He's had 2 surgeries and they were botched.  He is still in need of a third surgery and is completely bed-ridden and in chronic pain daily.  He is on SS disability.  There are no doctors where we live and no one here will see him because they are afraid of malpractice suits since he was mis-diagnosed so many times and his first two surgeries were botched.  Anyway, long story short.  I don't know how to live with this.  He says everywhere he turns he has road blocks - either insurance or waivers or doctors not recognizing he has Chiari because they'll only look at MRI's that don't show anything though he's already been diagnosed and had two brain surgeries!  I see many of you have had these types of issues.  How can I get him an appointment with Dr. Oro or ANY reputable Chiari specialist on the west coast?  He suffers so much daily.  And, I admit, it gets hard for me to deal with his depression and "why me" demeanor though I know he suffers a great deal and feels like no one will help him.  If anyone has any advice on how to get him seen by Dr. Oro or other specialist please tell me.  He had Chiari when I met him and still he's the most amazing person I've ever met.  I want to be with him forever - but he can't enjoy anything in his life being this ill.  Please help if you can and best of luck to you all.  Thank you.

[selmaS]

Hi and welcome to the Chiari forum.

Like Lizzy mentioned in the above post, many chiari drs will review MRI's...some do it for free while others do it for a minimal fee.

I know Dr Oro will work on non virgin back and necks...his words not mine....I had the pleasure to meet him at a chiari conference and wished I could have traveled to see him, but I was also lucky to meet some other chiari drs and it was one of them that eventually lead me to my NS and surgery.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

Here is a link to the thread Lizzy mentioned in the above post.....
and like she said, do research on all drs to find one that is right for ur BF.

Glad to have u here, but sorry for the reasons that brought u.....

"selma"

[n40066]

hi there and welcome to our chiari family...even if it is thru marriage to be!  lol!  chiari is just as difficult sometimes for those we love as it is for us.  he's very lucky to have someone like you in his life and i'm sure he realizes this.  you can send his films to just about any specialist and they will look at them and give you their opinion as to weather they can help him or not.  i went to dr. heffez in wi.  he charges nothing to look at your films.  he also takes the medicare that your boyfriend has, and the rates out there are much lower than they are around the northeast where i live.
many of our members have used dr oro and liked him.  he charges 40.00 to look at your films, but as before you send them if he does redos....some drs will not.  check out the list of specialist we have here on the forum and just call the ones that you are interested in.  make sure you do your research before hand though to make sure the fit is good for you, they take his insurance...
good luck, my friend and i hope you'll come back and keep us posted.  this is a great place to come for support, hope, help and just someone to listen!!
elizabeth