[sweettheresa]

My life has changed so drastically in the past 1 1/2 years.
I got injured at work, and have been unable to return to my job since. (out on workmans comp for now, but they are trying to label me mmi or make me get surgery for tos- decompression of the brachial plexus).

I have been in chronic pain (a 9 out of 10) for a year, than down to a six, now I found if I use my left arm enough so it doesn't click from underuse, and try not to use it to do any lifting or excersise I can maintain my pain level at a 3-4.(Also therapeutic massage has really helped too for the past 2 months).

Before TOS I was diagnosed with scapular winging, so when they changed my diagnosis for the 5th time to something called tos, I was weary.
I am still weary as NO diagnostic tests have been done, other than lift your arm, turn your head, feel my pulse, feel my thoracic nerve is one of the most tense nerve bundles this doctor says he's ever seen.

Reading about other people's experiences w/ tos on here is both encouraging & frightning. Surgery outcomes seem to be on a individual basis, i'm having trouble finding diagnostic tests I can try and get done to rule in tos for sure, and I really want to find out what type of tos specialist doctor I should go to on my own (outside of workmans comp) to help me get better & tell me if conclusively if I do or do not have this Tos.

Prior to this injury I was a windsurfer -mountain biker- and loved aerobics, now I'm gaining weight, can't do any excersises without raising my pain level to a 5-6 which I cannot bear to stand anymore (as I have been off of pain medicine for 6 months - since my previous neurologist had me on Lyrica- which really made me feel suicidal from the pills)
But of course he never heard of that side effect .

I'm trying to keep somewhat busy to keep my mind off of the pain, my situation - the uncertaintly of it all- The questions & lack of answers- Maybe never being able to work at my previous job (which I really enjoyed doing)
Sometimes I feel like I will be ok (one way or another) and other times I feel like dying But than I think, get a hold of yourself.
Just the thought of living the rest of my life with this pain & restrictions sounds so unbearable at times)

So here I am, thanks for reading my introduction to me
I'm so glad your all on here too to support one another, it's so helpful to share whatever info & experiences we have to help one another

If anyone has tried alternative forms of healthcare for this tos- I would love to hear your experiences & if they worked or not.
I'm thinking about acupuncture & would love to have other natural options to explore b4 considering surgery as an option.
I'm in NJ so any doc's you can recommend from this state would be most welcome too. I can travel to NYC and PHL if you have great doc's from their too.

I look forward to meeting you & hearing your story too

[ginnybean32]

I was diagnosed with TOS had surgery on the left side was doing much better with the pain then had a car accident and then had scapular winging. I found a specialist in Houston for brachial plexus injuries and had surgery with him to stop the scapular instability. That freed up the whole plexus to relax. It depends on who you go to what comes first fix the chicken or the egg but either way..I am now to a 0 or on my worst days a 3-4 on the left side..I havnt gotten my right side fixed yet....scared of that surgery pain...I still am left with burining and numbness which is a nuisance but I can live with instead of that horrific 9-10 pain...The surgeon that fixed my LTN nerve is in Houston and he will consult with you over the phone if you fax all your records and send pictures of your back ( the winging scapula). If I were in your shoes I would get all the facts before commiting to a surgery...

But know this everyone's outcomes are different...No 2 people even if they go to the same doctor will heal the same, rehab the same...or be fixed...its a crap shot I think with this surgery...if the evidence like EMGs are saying the nerves are pinched the surgery might be more benificial than say a person who is having pain but has no evidence of a nerve impingement...just my thoughts and only mine...if you want the name of the brachial plexus specialist let me know...he saved my life from pain and disability...I was in a mess before I went to him....so I know the desperation. I am doing very well when I dont drive everyday!!! But its effecting my right side now which has not had surgery. Good luck with your decision.

Originally Posted by sweettheresa

My life has changed so drastically in the past 1 1/2 years.
I got injured at work, and have been unable to return to my job since. (out on workmans comp for now, but they are trying to label me mmi or make me get surgery for tos- decompression of the brachial plexus).

I have been in chronic pain (a 9 out of 10) for a year, than down to a six, now I found if I use my left arm enough so it doesn't click from underuse, and try not to use it to do any lifting or excersise I can maintain my pain level at a 3-4.(Also therapeutic massage has really helped too for the past 2 months).

Before TOS I was diagnosed with scapular winging, so when they changed my diagnosis for the 5th time to something called tos, I was weary.
I am still weary as NO diagnostic tests have been done, other than lift your arm, turn your head, feel my pulse, feel my thoracic nerve is one of the most tense nerve bundles this doctor says he's ever seen.

Reading about other people's experiences w/ tos on here is both encouraging & frightning. Surgery outcomes seem to be on a individual basis, i'm having trouble finding diagnostic tests I can try and get done to rule in tos for sure, and I really want to find out what type of tos specialist doctor I should go to on my own (outside of workmans comp) to help me get better & tell me if conclusively if I do or do not have this Tos.

Prior to this injury I was a windsurfer -mountain biker- and loved aerobics, now I'm gaining weight, can't do any excersises without raising my pain level to a 5-6 which I cannot bear to stand anymore (as I have been off of pain medicine for 6 months - since my previous neurologist had me on Lyrica- which really made me feel suicidal from the pills)
But of course he never heard of that side effect .

I'm trying to keep somewhat busy to keep my mind off of the pain, my situation - the uncertaintly of it all- The questions & lack of answers- Maybe never being able to work at my previous job (which I really enjoyed doing)
Sometimes I feel like I will be ok (one way or another) and other times I feel like dying But than I think, get a hold of yourself.
Just the thought of living the rest of my life with this pain & restrictions sounds so unbearable at times)

So here I am, thanks for reading my introduction to me
I'm so glad your all on here too to support one another, it's so helpful to share whatever info & experiences we have to help one another

If anyone has tried alternative forms of healthcare for this tos- I would love to hear your experiences & if they worked or not.
I'm thinking about acupuncture & would love to have other natural options to explore b4 considering surgery as an option.
I'm in NJ so any doc's you can recommend from this state would be most welcome too. I can travel to NYC and PHL if you have great doc's from their too.

I look forward to meeting you & hearing your story too

[sweettheresa]

Hi & thanks so much for taking the time to write me.
It's very helpful to hear your story and compare our similarities.
I have been wondering if when my scapular winging is completely healed if that will fix the tos problem too, but the workmans comp doc's are so useless, I cannot get any answers from them

I hope my scapular winging will heal on it's own, but it's been a year and 3 months and every month it does improve as long as I don't lift anything with that arm.

That's great your left side is almost pain free. How bad was your scapular winging ? they say mine is mild ( but it's causing such a huge problem)
What type of surgery did they do to fix your scapula?
I was told the only surgery they could do for that is reconstruction of my scapula.

Thanks again for your help

Originally Posted by ginnybean32

I was diagnosed with TOS had surgery on the left side was doing much better with the pain then had a car accident and then had scapular winging. I found a specialist in Houston for brachial plexus injuries and had surgery with him to stop the scapular instability. That freed up the whole plexus to relax. It depends on who you go to what comes first fix the chicken or the egg but either way..I am now to a 0 or on my worst days a 3-4 on the left side..I havnt gotten my right side fixed yet....scared of that surgery pain...I still am left with burining and numbness which is a nuisance but I can live with instead of that horrific 9-10 pain...The surgeon that fixed my LTN nerve is in Houston and he will consult with you over the phone if you fax all your records and send pictures of your back ( the winging scapula). If I were in your shoes I would get all the facts before commiting to a surgery...

But know this everyone's outcomes are different...No 2 people even if they go to the same doctor will heal the same, rehab the same...or be fixed...its a crap shot I think with this surgery...if the evidence like EMGs are saying the nerves are pinched the surgery might be more benificial than say a person who is having pain but has no evidence of a nerve impingement...just my thoughts and only mine...if you want the name of the brachial plexus specialist let me know...he saved my life from pain and disability...I was in a mess before I went to him....so I know the desperation. I am doing very well when I dont drive everyday!!! But its effecting my right side now which has not had surgery. Good luck with your decision.

[horsemommy]

my TOS actually caused my scapula winging believe it or not! The muscles are all so taunt it's pulled the entire shoulder forward by 3 or 4 inches! NO matter how much I try to "hold it back" and do my correct posture positions it won't "stay". My stretches actually aggravate it
I thought I was seeing things when I noticed it and only casually mentioned it to the TOS dr and he confirmed it. So your winging scapula may be a symptom of TOS and not necc the cause.
Hope you get the answers you seek.

[LinJane]

I am so sorry you are going through all this. I am also in NJ (Tinton Falls) and have a great TOS specialist in Wilkes-Barre, PA, Dr. Togut. He performed my rib-resection and scalanectomy in 2000. It took me a year to be pain free. I was pain free for 6 years until I had a relapse. I drove to and from NJ to FL under fairly stressful conditions which I am now paying for. Although, the pain I have now is about 20% of what I had before. It is now becoming easier. Also, there is a Dr. Schwartzmann in Philly who diagnosed me in 1999. He is supposed to be very difficult to see.

Best of luck and if there is any NJ info regarding hospitals or doctors let me know! Linda