14 years of constant pain and i finally got a tos diagnosis!!!!!
 

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!

Welcome! I can completely understand your relief. I think it's always easier to deal with facts than with lack of information, fear or doubts about your own experience.

I'm sorry you've got TOS. But you've had it for 14 years, so that's nothing new. Now you just know what you've got.

Good luck,
Kelly

Welcome

There's so many self-help things here, you're going to find something that helps you.

the "SEARCH" feature is a great place to start.

See you around...

What a journey!
 

OMG - you've been suffering and worrying so long, it's easy to understand your relief and happiness over finally knowing (for sure) what's wrong.

Of course it's not fun to have TOS, but it's definitely worse to not know!

I got my diagnosis fairly quickly from a vascular surgeon following an angiogram, but even getting to that point was of my own doing - I checked myself into a free cardiovascular screening (at the age of 35, surrounded by mostly elderly patients) with the hope of talking to a doctor about my differing blood pressures and blue hands. He suggested TOS after confirming a 20 point difference in BP's between left and right, and then doing the physical arms up/back tests, etc. Armed with that at my primary doctor's office, I was referred to the vascular surgeon. Even though the vasc. doc diagnosed it, he would even consider treating it due to a lack of experience with the condition. 9 doctors later, I found my thoracic surgeon that later did bilateral surgeries that saved my arms from a nearly complete lack of blood flow, saved my life from bulging (aneurysm-ready) subclavian arteries and veins, and saved me from a lifetime of nerve pain, numbness, and tingling.

MY journey took several years and endless hours of worrying and wondering. I CANNOT even imagine what it's been like for you . . . so much more.

I'm glad you can finally move forward and get the help you need. Realize though that getting actual treatment may still be very difficult. INSIST ON IT - you shouldn't have to live with this for another day!

Good luck to you . . .

Carrie

o2bponca - yes, the relief of finally knowing is INCREDIBLE. i absolutely had given up years ago on ever getting a diagnosis and EVER getting any kind of treatment that could improve my condition. To think there's a chance that i can have a normal life feels like i get to start my life over. that i'll think of these 14 years as my 'dark ages'. i just hope it works out that way.

my two kids have never really met the real me. i want nothing more than to have them see the old me and not the one that is constantly in pain. I'm so afraid that they think of me as a lazy bum. the first thing my son (7) said when i told him they finally figured it out and there's a possibility that i'll be 'fixed' was 'does that mean you'll be able to play catch with me?'. it's so hard for me to not get my hopes up. i think that's the one thing i'm battling right now. trying to be realistic. i've had so many let downs.

anyway, this forum has been great. so much information!!!! and so many good people. now that i know what i have i finally feel like i fit in somewhere. i haven't had that in a really long time.