New to A/TOS Diagnosis, More Tests?
 

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.

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 :hug:

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.

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?

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.

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!

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.

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.

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?

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?

No. Not the same. After looking around the site I found you had your first surgery before my child's surgeon moved to AZ.

I couldn't edit or delete my post. I'm not sure if it is possible on this site or if I just don't know how.

Yep, surgery is in the future...the near future. Just hunting up some docs and trying to learn what is important to ask/know about surgery, approaches, etc. My son is so relieved to have a diagnosis, and so am I.

Wondering...you had transaxillary approach, right? Was your first rib removed completely to the sternum, or only partially? I am waiting for a call from his potential surgeon to ask some specific questions about the plan of attack. Apparently the details really matter to long term success, like having a complete rib removal, and having scalenes removed and not just cut? Am I understanding that right? Or is that just the theory of some docs (that those criteria are necessary to long term success, or maybe they are just applicable to n/tos?)...I feel like I have so much to learn and so little time...we are told not to dally too long or the situation will become complicated with a blood clot.

I also had transaxillary approach and I can tell you what my surgon said when I asked him these questions...

Only a piece of my rib was removed and scalenes were detached but left in. He felt it wasn't necessary to do anything more invasive. It seems like it varies from doc to doc and depends on what is being affected by the TOS.

Personally I was happy with transax approach because no large muscles were cut which was a concern for me. I don't know if this will help but I found this an interesting read...
Advanced Therapy in Thoracic Surgery

The page I'm pasting describes exactly what happens during surgery and there is a lot of great info in the whole book though it is A LOT to read. Personally this kind of info helps me. I do know how you feel as I went into my surgery pretty much blind!

A/TOS and V/TOS bilaterally. We were told we could wait indefinitely as long as the arms stay down by my child's side. There was no blood restriction in that position, but it makes life near impossible to live life to the fullest. We were told though that if a blood clot does happen or vascular damage is done, it would be a lifetime of medical follow-up. So, we weren't rushed into a decision because of the diagnosis. We were just told that caution had to be take with movement. Of course, my child woke up every morning with the arms over the head.

Does your teen have restriction in all positions?

I am getting a second opinion as soon as I can find a suitable doc in my area for that. I do feel rushed by the first, diagnosing doc. That is one of the things I want a second opinion about, the rush or not. Restrictions are keep arms down, no lifting or carrying weight like heavy books for school, watch for signs of clot. But kids have the understandable invincibility syndrome and I catch him laying on the sofa with an arm thrown across his head, sleeping overhead, he has to raise them for daily stuff like shampooing hair.

Was your child symptomatic? Did yours have surgery? Mine has been symptomatic for a year and the pain is limiting even regular activity. His venous involvement is what concerns the doc because his body has created a workaround with other veins that can't handle the load, which is what is causing the symptoms, pain, as best as I am understanding it. The dr says the artery is tougher and not of immediate pressing concern.

Thanks for the link! Sometimes I think I would be better of going into this blind, lol. It's funny because if I was the patient, I'd be far less questioning than I am being and would probably just go into it without a second thought. But it's my kid. Though he is nearly technically an adult, I am still responsible for the decision, choice of surgeon, and so forth and I don't want to do wrong for him. I will be reading more of your link.

I sent you a private message. You can find it at the top right where your user id is when you logged on.