45 years of suffering with Venous TOS
 

Jan 1967 that's when it all started, arm swelling a lot, purple in color, discomfort, in basic training in the Army alone and many miles from home. This 19 yr old male thought he was going to die and the staff at the hospital thought I may not make it also.

I was treated with anticoagulants and stayed in the hospital for 6 weeks, when I was released on limited duty and told to live with results, they had done the best they could.

I did survive and learned to live with my Padget Schroetter Syndrome as they called then and some still do. Constant pain,swelling from time to time, heaviness, weakness. Physical overhead activity always caused me problems and another search for a solution.

The Mayo clinic in 1981 said to live with it, so I did until this Sep when I went to see Dr Thompson at Washington Univ in St Louis, Mo. I had previously talked with Dr Molina with Univ of MN who said despite my age that I was good candidate for surgery. After meeting with Dr Thompson, I chose to have surgery in St Louis on Oct 4th 2012.

DR Thompson performed right paraclavicular thoracic outlet decompression, a little over 9 hours and one less rib, less muscles and a rebuilt subclavian vein with a donated vein.

Five days later released from hospital but stayed in hotel and met with TOS staff and PT to start 6 easy ROM exercises. Cleared to return home with my wife driving the 285 miles and me being drugged and sleeping most of the time.

It is now 3 weeks and every day seems better, can now walk 20 minutes at a time, drove the car for the second time. Still not able to sleep thru the night because of the pain.

Anyway, glad I had the surgery, was not so sure while in the hospital, going back to St Louis on the 8th of Nov for follow up.

Thanks for listening.

Onelessrib. (not so unique on this forum)

I am so glad you finally have some relief. Best of luck on your recovery. Please keep us posted. Did you have any Neuro probs or was it all vascular?
Thanks

Hello & welcome,
It's good to hear you are doing well, keep up the progress:).

Great !
 

So good to know you are doing better with surgery. Please keep posting about your progress every now and then, so others her learn from it and can help themselves.

Good luck with your recovery!

Yes, I also had Neuro issues just never realized it until Dr Thompson explained what was going on.

Regis

42 years with TOS, considering op.
 

Hi,

I am sooo happy to have found your post. I have had TOS for 42 yrs. Dr. Dean Donahue, Mass. Gen. Hospital, Boston is my doctor. He says I do have TOS which I have been diagnose more than once in the past. He will operate on me as long as I realize I will have a flare up for several months with it. I asked about the shooting nerve pain that comes with operations (I had it for 1 yr after being cut for breast biopsies). He agreed that will happen. I have extreme problems with being cold, to the point of my R side just burning in pain. No pun intented, I feel as if someone put in front of an air conditioner in a wet bathing suit where I was left with the door locked unable to get out. I wondered if you ever had this problem and if so did it go away after you were operated on. I also, in addition to the shoulder, arm, elbow, wrist and hand pain and heaviness my scapula and one place on my spine hurts. Were these anything you experienced. Your post is so very encouraging that I almost want to go to Dr. Thompson. My doctor, Dr. Thompson and Dr. Freischlag from Md just finished a book about TOS scheduled to come out in April. I believe it is focused on how difficult it really is to diagnose TOS etc.
I would love to hear back from you. Where are you located I am about 1 hr from Boston. I am,

irisheyesmilin

Question from another venous TOS person
 

Hi, just another venous TOS person with question to onelessrib and irisheyessmilin: Why you waited (or are waiting) so long to have surgery?
I am in the hesitation phase myself but was only diagnosed this past year. Trying to learn all I can. Thanks.

Hi starfish 43,

It is 121/26/12. I am not sure when you came on here. I just fell over your thread just now. Is there a schedule or certain way to find out if I receive an answer to any of my threads. It's not like email that's for sure, lol. Anyway, the quick answer to your question about waiting is this. With the information I was finding most op were more 20%/80%. Twenty percent did well and the others not so well. So, for years I went to dr after dr getting pt over and over with no results. Some pt would not even be used today it was so detrimental. Then there were the biofeedbacks, acupuncture, meditation (which usu always helps with pain), needling, shots, cortizone etc., etc., etc.
I would tell the pt's, call me please if anything different comes that I have not tried, I'm always willing to try and I would not hear anything. For a long time I just gave up after. I was told I have FMS (fibromyalgia) and that it is close to TOS and that it wasn't TOS. For years I was led to believe it and just didn't pursue anything else. Deep down I knew it was mechanical and yet I felt so suppressed by the no's. I started to research on my own and over a long period of time realized I wasn't going to be told it wasn't tos, plus there was more information being talked about. In the past no one spoke of it. I would from time to time, when I was sick and tired of it, check best docs to check on any progress there and on Neurotalk. The last time I did that I decided to start looking into it again and did with Dr. Donahue.

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I believe that you are in good hands with Dr Donahue just as I was with Dr Thompson. I did not experience that much cold sensation, mine was more heaviness, weakness, swelling, mostly because of Venous TOS. I am not close to Boston or St Louis, we drove about 4 hrs to get to see Dr Thompson, we have made the trip 4 times, eval, surgery, follow up, surgery to remove fistula, the last 3 trips also included a visit with the PT who works closely with Dr Thompson. In addition I am also going to PT locally weekly. PT is working on ROM and trying to awaken the nerve so my shoulder blade will move, no weights yet, just have to be patient waiting on the nerve to come alive.

Overall I am doing very well and glad I had the surgery.

Regis