[Lespauldude]

Hi,

I am looking for a competent surgeon for my son who may need first rib resection for venous TOS. We live on Long Island and I have heard of some very good TOS surgeons in NYC (I just can't recall what hospital they were afilliated with). I am going to ask my surgeon(who did my Whipple surgery) to ask around but I thought I would try here as well. Thanks for any help!

Scott
Kings Park, NY

[tossucks]

I have no answer for your question just some advise, and questions....
what kinds of symptoms is your son having and how was he diagnosed.
Please do as much research as possible, and reading here regarding this surgery...It is a very complex surgery, and even the best of the best surgeons can have poor outcomes....please take this as friendly advise only...
cheers,
Jay

[Jomar]

If you can find out the ones that do the professional ball players' surgeries - those should be some of the top ones.
Pro ball players probably get the best surgeons they can.

But as Jay mentioned, it's a gamble sometimes.

I would ask how bad are the symptoms on a normal day?
what is his avg pain level during a normal day?
what fitness level is he at?
his age?
overall posture - head forward, shoulders hunched or forward?

Has any expert PT, chiropractic, bodywork, or any other therapies been tried?

Though a clear cut case of vascular/venous TOS with a skilled/expert surgeon usually does have better outcomes most of the time.
Make sure they explain exactly the whats, whys & hows about the surgery. So you all know & understand.

Does he have a lot of swelling from the blood being backed up in his arms and not flowing back to the heart?

Drs & PTs - http://neurotalk.psychcentral.com/thread135.html
useful links & info- http://neurotalk.psychcentral.com/thread84.html

[Lespauldude]

Thanks for the quick reply, Jo*mar. I have answers to your questions below in red. His particular case is as follows: last July he was admitted with a swollen/tight left arm and had clot-busting done for many small clots in his arm. A stent was put in place (the vein was a congenitally thin one and was causing the problem). They put him on Coumadin and an anti-coagulant. They wanted to try this approach in hopes that a rib removal could be averted down the road. A few weeks ago his surgeon did a follow-up sonogram and stated that the stent looked fine. He is going in today to have a veinogram(sic?) done as well. As luck would have it, a few days ago he said that it was starting to feel a little tight in the arm again. I am just trying to be pro-active at this point and look for surgeons who are skilled in this in case it comes down to this surgery. I do realize that the type of TOS that he has has fairly decent results (if a good surgeon is used). There was NEVER any pain involved with this. Just some tightness/swelling and a slight reddening. I did look up and found the MLB Texas Rangers players who had surgery for this. One of my co-workers is married to a girl who is in charge of a string of hospitals out here and has a co-worker who had the exact same surgery last year(successfull). I am getting the name of his surgeon and will speak to him as well. Thanks again!!

Originally Posted by Jo*mar

If you can find out the ones that do the professional ball players' surgeries - those should be some of the top ones.
Pro ball players probably get the best surgeons they can.

But as Jay mentioned, it's a gamble sometimes.

I would ask how bad are the symptoms on a normal day? Nothing until 3 days ago - slight tightness/swelling/redness.what is his avg pain level during a normal day?
what fitness level is he at? Fit - skinnyhis age? 23overall posture - head forward, shoulders hunched or forward? head forward/shoulders hunched in front of computer alot
Has any expert PT, chiropractic, bodywork, or any other therapies been tried? none
Though a clear cut case of vascular/venous TOS with a skilled/expert surgeon usually does have better outcomes most of the time.
Make sure they explain exactly the whats, whys & hows about the surgery. So you all know & understand. That is my intention
Does he have a lot of swelling from the blood being backed up in his arms and not flowing back to the heart? not that much at all

[Jomar]

Whatever way this plays out with surgery or not - the upper body posture is a big thing to pay attention to, it helps keep those important spaces open.

[Lespauldude]

Hi Jo*mar -

Just got off the phone with my son. The test showed excellent blood flow and his surgeon said that he doesn't need the surgery. He will be coming off of the thinner/anti-coagulent in 2 weeks. While it is good news I am still collecting names/numbers of surgeon's who have done this. I lucked out this morning when a co-worker stated that his wife (who is a Catholic Health Services Hospital executive) works with a fellow that had the rib resection last year and everything worked out fine for him. I am getting his name/number for potential future reference. Perhaps my son has "dodged a bullet this time". I mentioned what you said about posture to him and he agreed. I had told him that a few weeks back. We will be shopping for a new ergonomic computer chair/desk tonight. Thanks for your help and advice on this. I am an Information Technology professional (30 years +) and I am naturally analytical/inquisitive, especially when it comes to health issues (I am a stage I Pancreatic Cancer survivor). When I began researching TOS and came across all of the horror stories regarding the surgeries I was stunned. Trying to stay a few steps ahead of cancer is one thing but to live in constant pain AFTER corrective surgery is unthinkable. There needs to be another way for these people. At least they have this board to go to. Thanks again!

Scott

Originally Posted by Jo*mar

Whatever way this plays out with surgery or not - the upper body posture is a big thing to pay attention to, it helps keep those important spaces open.

[Lespauldude]

Thanks for the sage advise Jay! I really appreciate it. If you follow this thread you can see how his TOS unfolded. At least now it appears (after today's test) that he will not require surgical intervention. As I told Jo*mar, I am still stockpiling names of competent surgeons "just in case" for down the road. Hopefully it won't come to that.

Cheers!

Scott

Originally Posted by tossucks

I have no answer for your question just some advise, and questions....
what kinds of symptoms is your son having and how was he diagnosed.
Please do as much research as possible, and reading here regarding this surgery...It is a very complex surgery, and even the best of the best surgeons can have poor outcomes....please take this as friendly advise only...
cheers,
Jay

[josepentia]

Scott,
I'm happy to hear that your son passed the venogram and that he is able to come off of the anti-coagulants. However, there is a possibility that your son may have arterial TOS- not a great possibility but one non the less. I have similar symptoms to your son (do a search for my name- also in introductions) and have been DX'd with ATOS. I passed my venogram with flying colors in 08. But failed miserably in the TOS positional doppler/ultrasound a few weeks ago- confirming that my left subclavian artery is severely compressed when my arm is above 90 degrees. Limiting all blood flow.
Please seek further consultation/testing to confirm/deny ATOS. I different Surgeon from the one I saw in 08 found that it was ATOS instead of possible VTOS.

Hope this helps, please feel free to PM me with questions,
Jocelyn

[Lespauldude]

Hi Josepentia -

Thanks so much for the heads up. Eric's is definitely venous because he has a specific genetic abnormality of the sub-clavicilar vein (it is very thin in one area). They discovered that last July and placed the stent in that very spot. In fact, the surgeon showed me the pictures (which was nice). The only reason this surgeon brought up the rib removal was IF the stent showed that it was being compressed/comprimised we would go that route. In fact my son said that they had done some testing with his arm at that angle. At least this guy seems to cover most bases. What is next for you at this juncture?

Scott

Originally Posted by josepentia

Scott,
I'm happy to hear that your son passed the venogram and that he is able to come off of the anti-coagulants. However, there is a possibility that your son may have arterial TOS- not a great possibility but one non the less. I have similar symptoms to your son (do a search for my name- also in introductions) and have been DX'd with ATOS. I passed my venogram with flying colors in 08. But failed miserably in the TOS positional doppler/ultrasound a few weeks ago- confirming that my left subclavian artery is severely compressed when my arm is above 90 degrees. Limiting all blood flow.
Please seek further consultation/testing to confirm/deny ATOS. I different Surgeon from the one I saw in 08 found that it was ATOS instead of possible VTOS.

Hope this helps, please feel free to PM me with questions,
Jocelyn

[josepentia]

Scott, not to take over your thread, haha- sadly I am scheduled for surgery in two weeks. Rib resection and scalenectomy of the left side. guess I'll be hangin pool side for a few weeks while I recuperate! Not a bad idea-

Glad that you and your son have it all worked out. I've found that surgeons can, on occasion, only look in one area based upon a hunch, and forget to order such a simple test to determine that there aren't any additional factors. I do hope that the vein is all that is affected and that the artery is 100% not involved.

Good luck,
Jocelyn