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

Why did I wait so long, well in 1967 surgery was considered but ruled out because the docs thought it was too risky with no guarantee of a real solution. I believe that was the right decision at that time.

In 1980, a vascular doc wanted to remove the first rib but he no experience so I declined. Visited Mayo clinic and they advised surgery was still not the best way to go and just live with the limitations. So I went on with my life.

In 2012 , things went south, more pain, weakness, swelling etc, so I started researching the Internet and found Dr Thompson. I was pleasantly surprised to find ou how far things had advanced and maybe there was a cure. After the eval I had a choice, actually I didn't, something new was wrong with my arm, so I decided on surgery.

Let me tell you, the pain after surgery was bad, but it only lasted a week or so and then I started to improve. I am so happy with the outcome, even though I am still having a couple issues, but then it has only been 12 weeks.

Bottom line, if this surgery was available in 1967 I would have had it done in a heartbeat.

Hope this helps and if you have add'l questions let me know.

Regis

One question
 

Hi, thanks again for your reply. I thought you had venous TOS? I have never seen a statistic like you mentioned. If anything, it's supposedly just the opposite for Venous TOS and results are good for at least 80% or even higher if it's a first-time operation. Plus based on the symptoms you described I'm wondering if maybe you weren't primarily a neurogenic TOS or non-specific TOS person?

old statistic for TOS
 

I found those statistics at the University of Massachusetts Medical School Library. It was a while ago, maybe in 1989. The person that originally diagnosed me, Dr. John L. Sullivan of Tufts Medical school who was very knowledgeable about it. However, he recommended PT and some of it helped for awhile and some made it worse. Believe it or not, I was a golfer then and some of the exercises where just like a golf swing. He told me, no pushing, no pulling a cart, no carrying a bag. Either a caddie or driving a cart if I continued to play. It is really funny because I couldn't vacuum, do housework etc. but I could golf. Try getting people to believe that. After doing this the tos seemed to get better until years late when I started college for the first time. Carrying books, writing notes and papers finally caught up a yr before graduation. It all started all over again and hasn't gone away since, just moved from my L to R side. Finished school with the help of friends taking notes etc. however I could not go on as planned to get my masters and Phd. Instead, I ended up living on disability and only until recently did I find Dr. Donahue in Boston at MGH. Had these surgery results been available yrs ago I certainly would have gone forward. However, I think of it this way. For over 35 yrs I've lived with the pain and I can do it for one more year or so in order to have approx. 35 more years to go out and live life as unrestricted as I can. After all, I told my kids I'm not going anywhere until I'm at least 100 (and well of course), so since I'm 66 now that should put me around there. I have a couple of surgeries I need to have before the TOS, one esp for it to be successful and then I'll be setting a date. I just hope and pray the coldness I have severely will be eliminated, it is so bad I believe it is worse than any other tos pain. I suspect it is some sort of pinch stopping circulation. I will discuss this with Dr.D when I speak to him next. Time for some sleep. Thank you to all who contribute and stay on long after their op. so that people can make good decisions as they follow you.
I am, irisheyesmilin

That's interesting what you say about the golf swing, and I believe it. I've been doing Intu-flow joint mobility exercises for several years now and it really helps. Many of the exercises are circular and rotational movements kind of like when you're swinging a golf club. I think those type of movements help to break up the muscle fibers and free up the nerves.

Just a quick thought on VTOS vs NTOS
 

For people who may be new to TOS and reading this thread, I just want to mention that it's always best to glean what you can from the web but always consult your physician(s). TOS is such an umbrella term and I have found for myself that when I first got diagnosed with VTOS that I spent a lot of time reading posts from people with NTOS and wondered why I couldn't get answers or solutions to my particular problems. I mean, sometimes I did find useful information, but it was very hit and miss. So please don't let anything we say or don't say scare you. No matter what kind of TOS you have, things are probably going to be different for you because no two of us seem to be alike. In my case, I have almost no pain and never had any pain before the diagnosis. But my first symptom was a blood clot that hospitalized me for a week and had me undergoing the wonders of modern mechanical clot busters. Not wanting a repeat of that experience or to spend the rest of my life on blood thinners, I am opting for a surgery. Some people with VTOS are diagnosed before they ever have a clot and may opt for a different path perhaps.

Thank you so much for sharing Onelessrib. There's not much info on TOS, especially VTOS. I'm wondering how you're doing now... I have been diagnosed with VTOS but no surgery yet. I'm not in a lot of pain (so thankful), so it's hard for me to justify surgery, but I always get scared when I hear that it could get worse... I'm so thankful that you shared your story.

Also, great point starfish on the NTOS vs VTOS. How was your surgery?