I don't mean to frighten you but you asked a few times so I'll answer. For me, TOS has been pretty disabling. It took a few years to get that way, but I got much worse after surgery.

I was never able to return to work (as an attorney). It's been almost 11 years since I last worked. I barely drive, or cook, or clean my house, no shopping, no laundry, I walk 15-20 minutes on a good day, I'm housebound much of the time.

So, yes, it can be quite disabling. But rather than scare you, let that be incentive to get TOS under control now, if you can. If you respond to rest or staying off the computer or whatever, then do that. You may need to radically alter your life, but it's better to do that and be able to control the pain than to radically alter your life because you're unable to do anything.

Good luck to you. If anyone suggests surgery, make sure you get yourself to the most experienced TOS surgeon you can find. A surgeon -- even an excellent one -- who doesn't have experience with this particular surgery is not good enough.

Take care,
Kelly

Thank you Kelly for your honest response.

I will start the treatment soon and hopefully I will get better. Did your problem start with the hands too and then progressed?

Also is it so different for each of us..so it is hard to guesstimate how is will be for you..

did you find our sticky threads?
I can link them for you if not..
But if you can take the time to go thru them , pace yourself tho.. it can be overwhelming, but educating yourself before going to many doctors & PTs is going to be a big factor in getting the best results..

You will be able to tell if something is or isn't helping you.

I was able to stop working and stay home , and after about 2.5 yrs (some delays due to work comp and dx focusing on RSI only) I can now do nearly anything I want to, but need to usually factor in some recovery time if certain activities are fairly continuous. Abrupt weather changes to wet/cold affect many of us too.

Generally vascular is considered "easier" to treat.
The nerves take longer to heal.

But you could be having spasms that are causing the muscles to clamp down on & impinging the nerves , and once those spasms are resolved the pain may resolve in time too.

That's why expert PT and docs are the way to go..

Yes Jo, I did find the sticky, read what you linked about the breathing.

It is indeed a lot of info, one think I know for sure, I need to give up the computer work.

I am also a dental assistant, I guess I could return to the field once I heal enough. Maybe even part time, most dental offices offer part time work. Just to keep me in the loop.

My TOS did start in my hands -- the thumb pads ached and the tops of my hands burned. Then one day I had horrible neck pain. Then my forearms, then shoulders, then bottom of my ribs, then scapula, then chest and armpit. And through it a lll, a diffuse headache and then later a localized headache behind my left eye (my worse side).

I started to feel a little crazy. I certainly felt like my doctor thought I was crazy every time I reported a new symptom. It took 9 months before I had a diagnosis of TOS.

Worker's Comp was fighting me each step of the way. Once surgery was mentioned, they stopped every treatment and I had to go to a hearing. I finally got PT after a 6 month wait but by that time I was trying to turn back the wave. Surgery, unfortunately, resulted in scar tissue on my brachial plexus.

I never thought I was disabled though I had a long term disability insurer that made me apply for SSDI (to lower their payout). Now, 11 years in, I see all the ways this condition has severely altered my life and I do feel disabled.

I do have LTD through my employer for which I will apply if for wc's claim gets denied. I am only 33, it is hard to imagine being disabled.

I still haven't had kids, I still have work to do in this life.

But whatever happens, happens...we can't control it.

The "funny" part is that this is/has been one of my lifetime obsessions, becoming disabled and relying on other people to take care of you.

Et voila! My nightmare may just come true.

It's not yet the final line in the book. Three months in, with proper rest, improved ergonomics, changes in posture and/or managing stress, appropriate PT, you may well drive the monster back. Fingers crossed.

If you do PT, beware of anyone who wants you to strengthen your way out. For most of us, that makes matters worse. Also, many people have a "no pain, no gain" mindset. That doesn't seem to apply to TOS. If it hurts, best to stop doing it.

That's my 2 cents.

Thank you Kelly

I'm not sure what the PT would consist of but I hope they won't make me use my hands much because I can't.

When I was doing PT for the cyst removal surgery, the strengthening exercises really flared me up, I was in excruciating pain for 2 days. That's when I stopped going and got that second opinion because I was getting worse.

I never did well with PT so I'm not sure what they would have you do that would be helpful, but some people are helped by it.

You mentioned that you do computer work and dental assisting. I know both of those occupations can really aggravate TOS symptoms.

If you are covered by workers comp, you may be able to be retrained for something that is less intensive for your arms and hands. My partner always joked that I could be one of those talking heads on the politics shows. If I could just sit there and spout off, I'd be in business.

Take care,
Kelly

Hello Nelly. First, welcome to the post. I've been reading your conversations and conversations with others. It saddens me to hear your story about TOS. I'm not going to make this long, but I thought I would share my story.

I've been dealing with TOS for 20yrs or more. I just had my 3rd surgery that I'm about to write about it on this post. This is a syndrome that's very, very difficult to diagnose. I've been fired from jobs. Previous surgeons didn't want to see me anymore. Some thought I was crazy. I've gone to numerous doctors, chiropractors, PTs, etc., nothing helped. As stated above, had two previous surgery, and a third one last Monday.

They just remove my first rib and scalene muscle on left side. Previous surgeries were on the right. Let me say this to u. I'm a man of the LORD, and I'm going to be honest to u, as I've been to others on here. Don't take this lightly. TOS changes your whole life. Right now, my wife and I are praying about my next chapter in this life. We r doing this because I don't know going back to my job will cause this to flare again. I do accounting work, so I'm on the computer all day. My answer to u is to seek a doctor that knows about TOS. Read about it. Stay on this forum. I know some people say they have gotten better, but my many years with this and listening to others, u really do not get better. Some people say use this, do that, don't believe every thing u read and hear. I agree with every thing Kelly wrote to u.

My faith in GOD has kept me going these 20yrs. U take care and keep in touch. Thanks for sharing your story. I'm praying for u.

Feel free to read my story.