Hello all. I’ve read this and other forums off and on for the past dozen or so years. Never really posted anything because it was too depressing. I’ve always thought I had tos but doctors always disagreed and told me I was wrong. I’m sure some if not most know just what I’m talking about.

Anyway, I’ve had really crappy pain for the last 14 years. I’ve gone to many many different doctors, my guess is I’ve had over 60 people evaluate me. I’ve been to the University of Minnesota, mayo clinic and pretty much everyone in between. Day after day, I’d think ‘how can I do this for the rest of my life’. At one point I got drug induced hepatitis because an idiot dr. was prescribing way too much meds w/ Tylenol (even after I told him I was taking the daily limit every day). then, when my ‘stomach’ (liver actually) started hurting he gave me stronger meds that were also hard on the liver. I got sicker than I ever thought was possible. Since then, I’ve had a very strong phobia against pain meds and I’ve almost completely avoided them (except for my 4 surgeries).

5 years ago I gave up on getting a diagnosis and started seeing a pain doctor (best decision of my life). In 2007 I had a spinal cord stimulator implanted to help me w/ the pain. It definitely helps, I got a new one in October (drained the 5-7 year battery in under 3 years). but I was still in a lot of pain and since then we’ve tried many different meds. Nothing has helped significantly or at least enough to warrant dealing w/ all the side effects. Recently, my pain clinic suggested I explore the pain pump. I was hesitant but the doc sold me when he said he thought I would have dramatic improvement in my pain (yes, I was very afraid of the risks of this surgery).

2 days ago I was meeting w/ the implant surgeon talking about scheduling a pain pump implant (to go along w/ the stimulator, not instead of) when the implant dr. said he thought I had tos. We had actually agreed on the pump and were talking about when to have the surgery when he started asking tos questions.

Well, the last couple days have been a bit of a whirlwind and I now have a vascular surgeon confirming the tos diagnosis. I cannot tell you what this feels like. I know tos isn’t the easiest thing to treat but it’s a lot easier than treating ‘it’s all in your head’. I’m literally on cloud 9 right now. I’m sure some of you are scratching your head saying ‘tos dx is nothing to be happy about’, but to me it is. I’ve always thought it was tos and now 2 respected docs agree w/ me!!!!

Anyway, just wanted to get that off my chest and introduce myself. I’m trying not to have too high of expectations about treatment but any real improvement would be great and hopefully prevent me from having to go the pain pump route.

Thanks for listening!