Tolosa Hunt Syndrome

[span]

12 month history of THS, very slow recovery on steroids. Any other successful treatments tried by other people with THS? Connie

[THS2009]

I have THS, got it in May 2009. Was on steroids for 3 months, and I am very happy to be off the steroids. My eye is still shut and paralyzed and I am praying it gets better soon.  I do still have headaches and I have had 2 steroid shots in the eye with THS.

[Jener8tor]

Span/ Connie...................... Since your post is from a while ago, just wondering if you are still on steroids? Did you ever try chemotherapeutic or immunosuppressive agents? My husband is the one dx with THS and he has been on predonisone for about 1 year now. (40mg daily). He can even reduce the strength by 5mg without having pain. I told his Dr about the other treatment possibility and she sed she would rather get him off prednisone and manage his pain in other ways.

Dr Roque ...... do you know of any physicians in the states that knows about THS? Aside from one neurologist who mentioned THS in passing at my husband's consultation, no other physician we have been in contact with had ever heard of THS. Even his current neurologist, that he was referred to because she is a headache specialist, had never heard of THS and had to research the condition before his next appointment.

[span]

Hi. Thanks for response. Will discuss these options with Neuro.but hope it doesn't get to that.In the meantime will keep looking for other people with THS for support/advice.

[Fernando Roque, MD]

Hi.  For THS cases which are not responsive to steroids, some chemotherapeutic and immunosuppressive agents like azathioprine and methotrexate may help.  Radiation therapy has also been tried with some success.