Hi to everyone, briefly was here about 2 1/2 yrs ago, and then for a about a year later... Had TOS all my life. Developed a blood clot, went in to hosp, emerg, didn't know TOS can cause blood clots. Had first rib out,(scalenes too) then 8 months later had the other rib out,(scalenes also, plus tons of scar tissue) on the other side. Now, after finally getting to a place where, I can exercise MY WAY...lost 10 lbs, turned 50 & fabulous lol,.. and life getting better... My fingers have started to get cold, and numb at times....and the old feelings coming back of pre-surgery. Just wondering if anyone out there, after all the surgeries possible.... and yes, I do still get the same pains.... have gotten the numb and cold fingers again. My big fear, is either scar tissue filling up the spaces, or muscle, I do lightweights... I am just afraid that the circulation problems, either nerve, or blood are coming back. I can handle the pains, the limited activities etc... but I am just afraid, of going back to the same state as before, the lack of circulation... So, if anyone has gotten back to the old ways before surgeries, I would like to know,, if it can all come back again...Linda....Thanks...

Hello and welcome -

If you read gibbrns posts she is having similar problems- surgery and sx returning.

I might suggest that for now - stopping all weights and concentrate on stretches and postures.
I just posted another good thing to do on Pixels thread.

are you hypermoblie?
just curious about that{theres a link in the stickys }
http://hypermobility.org/beighton.php

I would guess that if you had scar tissue before sugery - that you might be one that develops it more than others.

Question for anyone??
Does the 3D MRA/MRI show scar tissue?? or what test would show it?

Hi Linda,
I watch my body now that its been nearly 2yrs post op. I know I will need surgery to remove my right cervical rib eventually as hand wasting is getting out of control. I continue to get cold or hot hands that change color. I just watch what I do now. I think excercise is wonderful when we feel better but if you are on narcotics which I just got off of you can do things to your body you dont realize you are hurting because the medicine numbs it.
I recently went through detox after 2yrs of being on narcotics only to realize my pain was not that bad. Actually near non existant except the numbness and tingling I still get with too much activity. With limitations I am functioning better than ever. Also the narcotics left me depressed, isolated and nearly destroyed my marriage. Im not saying everyone by any means needs to get off their drugs...everyone knows their bodies and what they need to survive this TOS YOU KNOW WHAT!!!!
But after 2yrs of hurting myself worse on medication being off of it I can listen to my body better and know what is causing my pain to come back and what dosnt. I believe this is a life long struggle and only knowing your body can you know what you need to do. I still get pain on the left side and some on the right but listening to my body and altering the things I do when I feel that inkling of pain prevents a full blown attack. I know not everyone has the luxury of stopping house cleaning or working so everyone must do what they do whether it means meds, chiro, stretching etc....Weights I was told by Annest and my other doctors are a no no....I started ballet and the weight fell off...I can excerise my arms in ballet with fluid movements and if it starts to hurt I stop.
Stopping the activity that causes the symptoms is the key I belive...just as if you had any kind of injury. Congrats on the 50th!!! and just do what you can. Walking on a treadmill was also key with me in getting back in shape after all my surgeries....the arms can wait. Household chores work those enough...at least in my case
Scar tissue is going to be a factor in all of us post op...It is created the instant they go in there but causing more is up to me. What I choose to do about that is wait...if its not bad I will not worry....Worry over this TOS LIFE NEARLY KILLED ME...dwelling on it nearly killed me....so I dont...I just as I said know my limitations and answer to them. If I can do it one day I will on another day I know I cant....I hope Ive helped....Amy

To "Jo"... I never thought of hypermobility, as being a problem in my neck and shoulders... however, I am having problems with my knee, and yes, I am hypermobile !... Of course with age, I am a little "stiffer".... but, yes, have always had to watch to not over stretch...and stretching would be great for me to do more of.... I do 5 miles a day, on a Gazelle, like nordic track...and my knee has started to bother me, but this machine, has been a blessing..because with the TOS problems,,at least I can do this, without pain in my neck etc.... And Amy (Ginnybean), I remember you from way back.. and no I am not on any meds any more... I have Rivotril, and demerol just in case.....I try to stick with tylenol.... spent too many years "foggy".... I am under a physio, so I know what to do, to not get hurt, however...I have to be careful, not to irritate the areas, to limit the amount of scar tissue building. I am just going to see, if this numbness continues, or if it happens only when I am cold... and listen to my body as far as over exercising goes.. I saw a neurologist, a couple of years ago... who told me that the pains will always be there, because I had the TOS for so long, the brain only remembers that kind of state ! I thought all the TOS pain, should go away after surgery, but, not in my case....gotta live with it. Thanks, Linda

Linda, my pains seemed to improve after surgery, but over... I'd say 6 months... the pains and swelling creeped back. Dr. Annest spoke to me and I described all my symptoms. He seems to think there is scarring of the Brachial Plexus that's making me miserable. I am one of those who does not have the luxury of having helpers for the daily needs of taking care of a home, so I blame mysef in a way for not getting as complete a recovery as I'd hoped for.

Overall Dr.A and I agree that I've had a 10% improvement. To me that's one or two fewer issues and stopping the progression. I've noticed that on my skin, scars tend to take 5 years to wear down. Perhaps that's true internally?? We'll see.

My guess would be that ANY weight lifting is a no-no. Go for the stretching, and walking.