[curby]

Hi all.

My teenaged son was just diagnosed with bilateral arterial TOS.

We are told he is simply "unlucky" to have this, when we ask why/what caused it. He had no trauma such as car accident, and he does not have a cervical rib per a chest x-ray. The diagnosis a A/TOS was made by Doppler ultrasound finding positional complete compression of the subclavian artery and subsequent venogram.

The vascular surgeon says he needs decompression surgery that includes removing the first rib, right side first as that is his more symptomatic side.

From I what am reading, the vast majority of A/TOS patients have a cervical rib causing the A/TOS. According to chest x-ray, my son does not have any cervical ribs. It just seems logical to me that the precise cause should be identifiable before surgery is attempted, so that surgery will actually fix the problem, or am I incorrect? Is "too crowded" sometimes the only cause? Are there other tests I should ask for?

Thanks.

[Emilina]

Hi Curby,

Is your son active or athletic? 4 weeks ago I was diagnosed with veinous TOS after my arm suddenly ballooned up due to a blood clot. I had no previous symptoms at all and I do not have cervical ribs. I'm a fitness and dance instructor, super active lots of arm movement and upper body activity. When I asked why it happened my surgeon said it's part anatomical luck of the draw and part specific activity that can cause the muscles in the thoracic outlet to grow or become inflamed enough to cut off the circulation. I had a venogram that clearly showed the vein being compressed at the first rib, a clot buster treatment and then surgery for a partial first rib resection. My arm immediately shrank back to normal size and a very thorough ultra sound post-surgery revealed that my circulation was perfect.

I don't know if it's the same for your son but for me it really was just muscles and first rib being to tight for my vein. If there is one thing I've learned from this it's to voice all concern and ask all questions until I'm satisfied. If your son isn't needing immediate surgery perhaps you can get a second opinion to verify? Wish you the best and a speedy recovery to your son!! If you or he have any questions about the experience I am happy to share mine.

take care, Emily

[Jomar]

How is his overall posture and especially upper body posture?

Head/shoulders forward of mid line when viewed from the side?
rolled, hunched, rounded back?

Did he play lots of computer games or video games - extended sessions over the years of forward arm /head posture?

Is he having a lot of pain or other symptoms?
If you can list out some of his symptoms or painful areas we might have suggestions to help .

Be sure any surgeon is expert at this if you go that route.. usually a vascular surgeon.


If severe pain /symptoms are not an issue yet and no immediate reason for surgery.... seek out expert PTs , chiropractors, and/or bodyworkers to see if things can be improved that way before opting for surgery.

[curby]

Yes, he was athletic and a video gamer. Not anymore thanks to the pain. Posture can be slouchy at times. PT and chiropractic have not helped.

We will definitely seek a 2nd opinion.

Most of the expert docs mentioned in these forums seem to be in CA, CO and MA... a bit out of our feasible reach.

Anyone know of a TOS specialist in the Philadelphia area?

[brmr19]

I have A/TOS and N/TOS and I do not have cervical ribs either. I am bilateral as well and my left side was worse than my right. I had the surgery on the side only 2 years ago. It helped with all the vascular problems but still have some nerve issues. The right side has maintained status quo and I continue with daily stretching and therapy at home. My surgeon wants me to continue at home therapy and will check me again in March. I have reduced the pain level in it and will get occasional flare up, but it took me awhile to modify my lifestyle and learn what not to do.

Originally Posted by curby

Hi all.

My teenaged son was just diagnosed with bilateral arterial TOS.

We are told he is simply "unlucky" to have this, when we ask why/what caused it. He had no trauma such as car accident, and he does not have a cervical rib per a chest x-ray. The diagnosis a A/TOS was made by Doppler ultrasound finding positional complete compression of the subclavian artery and subsequent venogram.

The vascular surgeon says he needs decompression surgery that includes removing the first rib, right side first as that is his more symptomatic side.

From I what am reading, the vast majority of A/TOS patients have a cervical rib causing the A/TOS. According to chest x-ray, my son does not have any cervical ribs. It just seems logical to me that the precise cause should be identifiable before surgery is attempted, so that surgery will actually fix the problem, or am I incorrect? Is "too crowded" sometimes the only cause? Are there other tests I should ask for?

Thanks.

[josepentia]

Hi there, I have A/v TOS bilaterally, and do not have cervical ribs. You do not have to present with a c-rib or a blood clot to be diagnosed with it. I have had a successful surgery on each side (left side first, it was urgent) and have had an excellent recovery. My surgery was in AZ- far away from PA, I know. I was just "unlucky" like your son- just wasn't born with enough room in there basically. If you go for surgery for your son, do you research on the surgeon, and the pre and post op treatment. If you're at all able, see if you're able to go to Boston to see Dr. Donahue as Mass general. If that isn't possible, be sure to ask the surgeon how often he/she has done this, how comfortable they are... ect. As far as further testing, a Doppler ultrasound (which is what it sounds like your son has had) is a great real time tool. He could have an arteriogram done as well, though its a bit more invasive. Getting a CT scan with contrast was very helpful in my case, very similar to getting a venogram done, but they are looking at there the dye goes/doesn't go once it reached the arteries. Positional is important! Must have those arms up and sticking up over the head to get an accurate test. If there's nothing wrong with your son in this test, then the dye should go in and out of his arteries with arms up with little issue. If there is a compression, that dye will stall, maybe even completely (it did for me- zero blood flow!) and that is a very good indication of surgery needed. Good luck and keep us posted!

[dwr37]

Originally Posted by curby

Hi all.

My teenaged son was just diagnosed with bilateral arterial TOS.

We are told he is simply "unlucky" to have this, when we ask why/what caused it. He had no trauma such as car accident, and he does not have a cervical rib per a chest x-ray. The diagnosis a A/TOS was made by Doppler ultrasound finding positional complete compression of the subclavian artery and subsequent venogram.

The vascular surgeon says he needs decompression surgery that includes removing the first rib, right side first as that is his more symptomatic side.

From I what am reading, the vast majority of A/TOS patients have a cervical rib causing the A/TOS. According to chest x-ray, my son does not have any cervical ribs. It just seems logical to me that the precise cause should be identifiable before surgery is attempted, so that surgery will actually fix the problem, or am I incorrect? Is "too crowded" sometimes the only cause? Are there other tests I should ask for?

Thanks.

My daughter had bilateral A/TOS with no extra cervical rib. The Doppler ultrasound initially identified a problem. The definitive diagnosis for my child was an venogram and arteriogram.

[dwr37]

Originally Posted by josepentia

My surgery was in AZ- far away from PA, I know. I was just "unlucky" like your son- just wasn't born with enough room in there basically.

My child's surgeon moved to AZ in the summer of 2012. All I can say is I'm happy we were able to have him perform the two surgeries in less than a month's time span before his move to AZ. Wonder if it is the same surgeon.

[curby]

Originally Posted by josepentia

Hi there, I have A/v TOS bilaterally, and do not have cervical ribs. You do not have to present with a c-rib or a blood clot to be diagnosed with it. I have had a successful surgery on each side (left side first, it was urgent) and have had an excellent recovery. My surgery was in AZ- far away from PA, I know. I was just "unlucky" like your son- just wasn't born with enough room in there basically. If you go for surgery for your son, do you research on the surgeon, and the pre and post op treatment. If you're at all able, see if you're able to go to Boston to see Dr. Donahue as Mass general. If that isn't possible, be sure to ask the surgeon how often he/she has done this, how comfortable they are... ect. As far as further testing, a Doppler ultrasound (which is what it sounds like your son has had) is a great real time tool. He could have an arteriogram done as well, though its a bit more invasive. Getting a CT scan with contrast was very helpful in my case, very similar to getting a venogram done, but they are looking at there the dye goes/doesn't go once it reached the arteries. Positional is important! Must have those arms up and sticking up over the head to get an accurate test. If there's nothing wrong with your son in this test, then the dye should go in and out of his arteries with arms up with little issue. If there is a compression, that dye will stall, maybe even completely (it did for me- zero blood flow!) and that is a very good indication of surgery needed. Good luck and keep us posted!

Thanks for your input. Yes, the venogram (and the pulse wave doppler) were done in various positions, including arms straight up. I am now told he has both v/tos and a/tos (no clots). (my original post said only a/tos). Due to vein involvement, I'm being advised not to linger for too long in wrapping my mind around surgery or to take too long with surgeon shopping (there is overload on compensating veins, clot risk).

Guess nobody has recommendations for Philadephia area docs?

[josepentia]

DWR37- Hmm that would be interesting! My surgeon is Dr. Michael Lavor- same as your daughters?

Curby- yes it sounds like surgery is in your future!! I'm sorry that I can't offer input on any Philly docs. Maybe take a look at one of the stickys on the main TOS page of surgeons listed? Or create a new post entirely asking for recommendations near PA?