Hello everyone!
I would love someone's opinion who has been through what I'm going through, because my head is spinning trying to decide what to do.

I was diagnosed with TOS a few years back, and have since cut my hours at work, and see a physical therapist and also chiropractor/massage therapist because of it. I have pain in the area which runs from my neck to my shoulders all the time, but have gotten used to it. I also have tingling, numbness and cold in both my arms and hands all the time. I thought that was all that could occur from TOS.

Recently I was diagnosed with a subclavian blood clot and treated with bloodthinners. Was seen by ER doc, hematologist and general practitioner. No one could have any explanation for what caused this. Finally after a few weeks, my practitioner told me of a condition called Paget Schroetter syndrome and told me to look into it. She put my in contact with a Dr she knows that specializes in Paget Schroetter. He is far away, but he ordered me a venogram to inspect the clot.

So, the venogram does show that my vein is still completely shut due to compression of my first rib. The vascular surgeon told me I need rib resection and release of some muscles and repair of the vein.

I asked him if he knew of anyone closer to me, as we are many states apart. He said no, there is no one in NJ, NY or PA who can do this surgery for me, and I should fly out to have him do it.

I told my hematologist about this and she told me that Paget Schroetter disease or effort thrombosis is hog wash and to continue taking my blood thinners and thats all I can do. She said as long as I dont have an extra rib, I cannot have this disorder.

I am so confused, I dont know what to do. Should I really travel 1,000 miles away to have this surgery done by someone who supposedly has a good reputation, but whom I havent even met? Has anyone else had this dilemma that could offer some advise to me? I'd appreciate it very much!!

Hi,
I don't want to advise but here is my experience.
I underwent a first rib excision op (2 months ago) due to arterial/venous compressions. The procedure was performed to relieve the pressure on my artery even though I did NOT suffer clot damage and had NO extra rib.
Believe me I know that you can have compressions without having an extra rib. When I raise my arms up (unoperated side) hand turns white and I totally lose my pulse while the operated side now has a strong blood flow and a nice pink colour to the hand.
I have post surgery anxiety due to the fact that I'm due a 2nd identical op on the other side to free up a venous occlusion.
I'm obviously tender after it and have some neuro issues plus the scarring is horrid BUT no occlusion. That in its self for me brings some kind of peace of mind. The fear of an aneurysm prompted me to go ahead with the surgery.
If you are unsure because you have never met the recommended surgeon than maybe you could arrange an online chat (skype) with him to discuss the procedure?
Best wishes with whatever you decide. In the meantime concentrate on your posture and relaxation techniques to help you through it.
SD38

SD38

Hello,
Have you looked thru our Drs & PTs sticky thread to see if a closer surgeon is listed there?
I really think someone as qualified & skilled should be closer to you....
http://neurotalk.psychcentral.com/thread135.html

And I would suggest a second opinion from another surgeon always.

Not sure about the schooling/classes a hematologist takes or has, but IF there is a complete compression all the time and expert PT, chiro and such hasn't helped much at all.
then surgery might be in your future....

But do read what others here are trying for self care maybe something new that hasn't been suggested for you...
AND -
How is your upper body posture???
Head forward - shoulder rolled or hunched forward these will close off the spaces and cause big problems, so if this applies and PT/DC haven't said anything about it or addressed it at all - find better treatment providers...

there are simple things you can do daily to open the area - I just posted to another new member here this morning and the info & pictures are in that thread. http://neurotalk.psychcentral.com/thread159504.html

If the venogram shows closure, I would not mess around with it. I would do as JoMar suggests and get a few different opinions. Would think someone COULD do the surgery where you're at - but whether you'd want that is another question. Personally if/when I have to cross that bridge, I'd want NOTHING but the best surgeon I could find.

Chances are (from what I've read extensively) your nerve issues will become worse, but vascular issues better from the surgery. So you're likely trading vascular peace of mind for neurological issues indefinitely - especially once scar tissue forms. Tough call, and I doubt there is a "right" answer. Only the best answer for you. You'd have to pick the lesser of the two evils, I suppose.

Have they said anything about imminent danger or severe risk in the meantime? How did the symptoms progress or go from Neuro to vascular? Did you try self care that produced any relief?

thank you SD38 for your feedback. My husband had actually suggested the same online chat idea. I'm sorry to hear you have post surgery anxiety and have to have the other side done as well. I am afraid I may be a candidate for the other side also someday, as my TOS symptoms are actually worse on that side. (however, no venous occlusion over there yet) Can you tell me, was it very bad recovering from surgery? Is this what is caused the anxiety you have?
I will concentrate on my posture and relaxation more. Thanks again.

Jo Mar,

Thanks for your help. My upper body posture is terrible. I tell myself constantly to sit up straight. I noticed lately when I see myself in pictures just how bad it is. Even when I'm just standing, and doing nothing. Thank you so much for the link to simple things I can do daily to open the area, and also the link of DR's I will look at them both tonight. My hematologist is so close minded, and no longer a help to me at this point, so I am not going to see her anymore. I will seek another opinion from a closer surgeon., before I settle on going to the one far away.
Thanks again, I really appreciate it!

Dear 343v343

Thank you very much for your input. The vascular surgeon says yes, he is sure there are Drs closer to me that can do it, but they do not do this particular surgery enough that I should feel comfortable going to them.
I didnt know anything about nerve issues associated with this surgery- see no one has mentioned that to me at all. It sounds like I can't or shouldnt walk around with an occluded vein for the rest of my life, so I guess the surgery must be the lesser of two evils. Yes I would travel far to go to the better surgeon, no doubt about that.

Nothing said to me about sever risk or immenent danger, just that I'm in a "chronic state" and it wont go away on its own. The surgeon told me stop taking my coumadin (blood thinners) because there is no need for it, since a blood disorder is not what is causing the occlusion, rather its caused by compression. My general practitioner told me to keep taking it, just to be on the 'safe' side.

No, self care has not produced relief for me. I have cut my hours so much I am practically unemployed. I may as well quit alltogether at this point...

Symptoms went from neuro to vascular when one day, out of the blue, my arm, hand and fingers swelled up to twice the side of my other arm. I had an emergency ultrasound which showed apparent subclavicle-axillary deep venous thrombosis.

Thank you again so much for your advise!

Did you get your TOS from repetitive stress? Poor posture? Do you know? I feel for you, it's a tough call.

http://my.clevelandclinic.org/disord..._syndrome.aspx

This is a good link, and there are others:

** What they don't tell you is that the scar tissue most often results in worse neurological symptoms. Many people wind up in MORE neurological pain after the surgery. I have consulted with a vascular surgeon who says his success rate is something like 95% -- It seems that almost any surgeon will tell you that you'll be fine, but I have yet to read of someone who had Neurological decompression that came out fine long term.

There are several links on the "success" of surgery, and there are personal accounts of those who have had it. It seems like those who have / got TOS from a cervical rib or a traumatic event (like a car accident) fare better than those who have it from microtrauma (repetitive stress).

Another good link: http://www.ecentral.com/members/rsanders/

From my perspective, without vascular involvement - surgery is a tough sell. When I "read" 70% success rate, I'd be more thinking more like 70% failure rate - based on what I read everywhere.

I feel for you, but if it's any consolation I'm in the same boat. I meet with a vascular specialist again in a week to see how much (if any) vascular involvement I have. And as you've experienced, who knows if that will remain for the future. I could have neurological issues one day, and the next month vascular. Seems to come on out of nowhere.

Were you doing conservative treatment to open up your thoracic triangle regularly BEFORE the vascular issues?

HI!

No, I wasnt doing anything really, except monthly visits to the chiropractor for adjustment and massage. Also- I did do physical therapy 3 times a week for about a year. Then I stopped because I didnt really think it was helping much- plus the excersises I learned I could just do myself at home.

I will tell you, I have poor posture. I also think it is probably repetitive stress too, as a dental hygienist. I have cut my hours from 40 hrs in 2005 to 28hrs in 2007 to 20hrs in 2010 to now 8 hours per week! (4 hours on monday, 4 hours on tuesday) Even after the first patient the pain and tightness increases, mostly the muscle that goes from the neck to the shoulder, and the tingling and cold arms begin again. I am ready to retire, and I am only in my thirties, how depressing...lol

Good luck with your vascular specialist- do you know what caused your problems? Until i had the vein thrombosis, I had no idea there was chance of vascular involvement with TOS.
I really appreciate your help and I will check out the links right now.





Did you get your TOS from repetitive stress? Poor posture? Do you know? I feel for you, it's a tough call.



This is a good link, and there are others:



** What they don't tell you is that the scar tissue most often results in worse neurological symptoms. Many people wind up in MORE neurological pain after the surgery. I have consulted with a vascular surgeon who says his success rate is something like 95% -- It seems that almost any surgeon will tell you that you'll be fine, but I have yet to read of someone who had Neurological decompression that came out fine long term.

There are several links on the "success" of surgery, and there are personal accounts of those who have had it. It seems like those who have / got TOS from a cervical rib or a traumatic event (like a car accident) fare better than those who have it from microtrauma (repetitive stress).




From my perspective, without vascular involvement - surgery is a tough sell. When I "read" 70% success rate, I'd be more thinking more like 70% failure rate - based on what I read everywhere.

I feel for you, but if it's any consolation I'm in the same boat. I meet with a vascular specialist again in a week to see how much (if any) vascular involvement I have. And as you've experienced, who knows if that will remain for the future. I could have neurological issues one day, and the next month vascular. Seems to come on out of nowhere.

[B]Were you doing conservative treatment to open up your thoracic triangle regularly BEFORE the vascular issues

I'm certainly no expert - far from it. In fact I am relatively new to TOS - like you, I am in my early 30's and facing the real possibility of having to reduce my work to nearly nothing. I had a flourishing business and have had to slowly diminish my workload as symptoms worsen.

I have seen nearly 20 different doctors and am no better off than I was - in fact my symptoms are slowly worsening. I fear being disabled and losing everything I have worked so hard for. Sadly, there is no "cure" and it seems like to some degree... Surgery or not... A full recovery is not feasible. I am/was self employed so I won't even get disability or workers comp. So I'm pretty much screwed. My only hope is trying to minimize pain enough to be able to work, which affords me small amounts of money to pay for pain relief.

It's a tough situation, honestly. I think my TOS was brought on my years of posture issues at a computer desk. I have been doing everything to try and improve it. Some days are better, some days I am so down and out I wish I'd die in my sleep.

I fear one day being in the place of having to decide if surgery is for me. I wish there was a better prognosis for it, but I can't see any reason to gamble yet for myself- unless the vascular symptoms emerge. I guess one has to weigh potential life threatening issues versus a lifetime of pain. I suppose if you're already in pain... Why not?

But to have increased pain? Tough sell. To go through a horribly painful surgery to wind up worse off seems cruel at best. I am bilateral as well so I'd really be pushing my luck.

If I were you I'd look up Dr. Sanders in Denver. Seems like people say he's the best. I realize it's a long flight but... ?