I'm falling into a major depression. I posted on here to learn about what might possibpy be cutting my circulation off to my right hand. I learned that the doppler ultrasound is the best test and arterial tos is easiest to diagnosis. Well I did a 4 hours test off doppler ultrasound and the only 2 hand positions they had me do was arm up and arm down. Then they did this strange test where they cut ur circulation off on ur arm and put this thing oj ur finger.

Anyway the doctortells me that I seem to have a mild problem on my right side with circulation. He doesn't know what's compressing or where . After all these hours I was told that there's some retriction. Well i already know that! I waited a month just to see him and he tells me I have to get all these other tests done. The ultrasound basically told him nothing. After all this !

Then he says sometimes if the symptoms r mild n they do surgery it might not fix the peoblem. He's like its better if the problems r more severe. so its not a good thibg that im finding out early its a bad thing?


Also if they find out what is causing the compressuon and remove it my symptoms may not go away anddcan still form a blood. clot. I'm doomed. Idk why I read so much success stories and how easy it was to diagnosis arterial thoracic outlet from doppler but of course not in my case. I left more confused than i went in. Surgery is not successfyl with neurological complaints but i have only circulation complaints. I need a doctor who knows what hes doing.

How'd u get diagnosed ?? If you have arterial thoracic outlet what your doctor say about surgery and cure ? I spoke with severwl people on here who've been cured from circulation blood clot problems from surgery. Now i got to worry what is causing my symptoms and now feel that even though i know I have this Vtos or atos I can't do anything about it so just sit and wait for my blood to start clotting. I'm miserable. I'm 26 and have.had doctors think ive had cancer to all types of things n i have gone through hundreds of tests. Here i go again with all these tests with a terrible doctor. There seems to be no light at the end of this tunnel.

there are anti clotting drugs

I was recently diagnosed with bilateral venous and arterial TOS, for which I will have one rib surgery in January, and then rib surgery on the other side about one month after that. This happened to me as a result of severe whiplash, and I have other neurological issues not commonly associated with TOS. I researched my strange symptoms on the internet, and everything pointed to TOS. I went to two vascular surgeons who told me I didn't have it (even though I had a positive ultrasound and CT!). I was, and am, very ill, and I KNEW I had it, and if I listened to those clowns I'd drop dead from a stroke or aneurysm eventually. So, thankfully, I finally ended up seeing an outstanding thoracic surgeon who told me, even with the positive ultrasound and CT, the only way to know for sure if you have venous and arterial TOS is to get an arteriogram (angiogram) and venogram. Those are the "gold standard" tests. Period. The tests are not without risk as they are invasive (but I didn't find them painful), but I can't imagine any reputable surgeon doing TOS surgery without having seen the results of those tests. Mine were very bad, with the subclavian veins and arteries ranging from completely to moderately occluded. In my case, since it was caught fairly early, I should only need the surgery itself and no vein/artery repair. My surgeon does robotically assisted surgery, and in my case, he will not remove the entire top first ribs, but just a part of each to open up the space where the arteries and veins are. I am a doctor's worst nightmare, in that I will not take "no" for an answer if I believe what they're telling me is not correct. Also, I literally became an expert on TOS through my internet research, so much so that I knew far more than those two vascular surgeons. That is a disgrace. They should have a full understanding of this syndrome; it is not some rare tropical disease--it is VASCULAR in nature after all! I don't know where you live, but if it is at all possible, you need to see a TOS specialist, otherwise, from my experience, you are completely wasting your time and money. Other doctors have little expertise in it. Unfortunately, these specialists are few and far between, but it is worth seeing one to get the situation resolved quickly so the clock does not keep ticking on forever and even further damage is done to your vessels.

The doctor saying you should wait until this is more severe is, frankly, negligent and dangerous. If you indeed have it, the surgery is far less complicated when it is done in the early stages of TOS. I can't fathom his thought process in saying something like that. Right now, my arteries and veins are "just" compressed, but not "damaged," but if they were damaged, I would need the whole repair thing as well; I'm not sure what they do for that--maybe bypasses or use artificial material to patch up the vessels.

What are those tests like ? How do you feel after your surgery ? What is the point of even having a doppler ultrasound ? How are they able to tell exactly where the compression
n is ?

Wow-your doppler ultrasound took 4 hours? I think mine was maybe an hour at the most and they had me do more than two arm positions. They had blood pressure cuffs on both arms and the little plastic pinching things on one finger on each hand. Did they test both of your arms? I sure hope so, otherwise the test doesn't mean much--it should compare one arm to the other. The guy that did the test was super nice and showed me on the monitor right away how the blood pressure, etc. was different in one arm. That was my first test, then I had a chest CT, WITH CONTRAST (very important to get it with contrast so they can see enough detail). For that they inject you with a liquid before putting you through the CT machine (goes very quickly). The only bad part is the needle stick, which lasts just a second. When the liquid goes into you, it kind of makes you feel like peeing, but you don't actually do it.

I think the reasoning behind doing the ultrasound before the CT is cost. The ultrasound is much cheaper than a CT and is sort of used as a screening test. If that is positive, then the more reliable/specific CT is done. Then, if that is positive, as in my case, an arteriogram and venogram are done. These tests show you EXACTLY where the arteries or veins are compressed, and to what degree. I've heard sometimes they do X-rays to see if you have an extra rib or other bony abnormality (I don't), but my CT already covered that. I had the venogram and arteriogram done at the same time (in the hospital). I went there early in the morning, had the tests done, and then had to stay until about 5 PM. For the arteriogram, they insert a thin wire through an artery in your groin and thread it up to your subclavian arteries. They have you put your arms in various positions and take X-ray-type images of your arteries. For the venogram, they insert the wire through your arm veins. Don't let this gross description scare you--they give you a sedative that relaxes you and for me, at least, it was no big deal. And I'm TERRIFIED of needles. They keep you for a while after the tests to make sure you have no bleeding from your groin. You are told not to do any heavy lifting or running for a week after that. I really didn't have any pain at the groin site. My best advice to you is study as much as you can about this on the internet, because knowledge really is power. I think the more you learn, the more in control you will feel, and you will know what questions to ask the doctors. My surgeon told me I will be in the hospital around 3 days, give or take, depending on how I'm feeling. He uses the transaxillary approach (going in underneath the armpit area). I asked him if I will be able to function on my own when I get home from the surgery as I live alone (get to the bathroom by myself, take my dogs out for walks, etc.), and he said absolutely. In fact, he WANTS me to move my arms around afterwards to prevent blood clots (just like in other surgeries). I will have pain meds of course, so I'm really not too concerned about that aspect of it. I think I will be so relieved to get this nightmare over with that I will be able to handle that pretty easily.

I'm very lucky in that I live in the Washington, DC metro area, close to some excellent TOS specialists. Two other things I would recommend, if you're not doing them already, is take a notepad to every doctor visit to write down everything important. It gets so stressful that it's easy to forget what they tell you. Also, even more important, get your own copies of the radiology reports AND the CDs (with the images on them) for any tests you get done (like CTs, ultrasounds, arteriograms, etc.). Where I live I am not charged for those. This way if you go to a different doctor, you have your results and images right there with you for the doctor to look at on his/her computer. That will save you time (and money).

I'm happy to answer any other questions you may have**

Thank you for responding. The tests I had did both arms and they also did the test with blood pressure cuffs. At first it wasnt working the blood pressure cuff test but then it seemed to eventually work. Hopefully the results were accurate. Basically, both of those tests showed that there is a slight difference with my problematic arm versus my normal arm. There is definitely something going on and I knew this before I had any tests due to my symptoms.

I have had dozens and dozens of ct scans and I am forbidden by my regular doctor to have any more radiation to my body. With that said, my surgeon explained that I will have an MRI done to determine more information. Eventually I would have to get those invasive tests which frighten me. I want to make sure I get the accurate diagnosis.

He didnt seem to give me much information. I walked out feeling doomed and even though the doppler didnt show any blood clots im assuming I will eventually get one because I do have some kind of compression going on. He explained that even with surgery it doesnt always seem to get better. What I do not understand is I do not have neurological TOS at all. I have either venous or arterial or both and if they could determine EXACTLY where the compression is and what is doing the compressiing than why wouldnt the surgery be at least 90% successful? They removed the culprit thats hitting my veins then I would think I would be cured??

An example would if I was stepping on a water hose and its compressed. ONce they remove my foot...wouldnt I be fixed ??

The venogram and angio gram that has radiation in it correct? I am 26 years old and I am afraid all the tests and surgery are going ot be doing more damage than I originally had. What was ur diagnosis and how are you doing now??

Hi there,

Just wanted to say that I hear you. I feel like I have been going around and around in circles, had every test possible, and no one is helping me. It is so frustrating, and disheartening.

The vast majority of my TOS symptoms are vascular in nature. I finally had a vascular ultrasound yesterday morning, but I'm not sure what the results are yet.

My CT scan with contrast, xrays, EMG and nerve conduction study all came back normal. The only thing that has been helpful thus far was the vascular study, which did indicate loss of blood flow to my extremities. My PCP, the physiatrist, neurologist and one vascular surgeon were clueless. Now I'm seeing the best of the best in New England, without much help. He prescribed Botox and PT - neither intervention has changed my circumstances.

I have asked if there is a risk of clotting in my case, but no one has indicated that possibility. I definitely see what you are saying though - if my blood stops flowing in some movements, I would think it is getting "clogged" somewhere? Who knows, though.

Jmaxweg - You bring up a great point. I think I will try to advocate for a angiogram next time I see the specialist. A new test might bring more information.

From what I read, surgery can be successful in treating neurogenic TOS (I think physical therapy is tried first), but not always at as high a success rate as the surgery for vascular TOS, which is at least 90-95%. Nerves are really tricky and sometimes once they're damaged, it's permanent. It's really pretty straightforward--for the vascular surgery, part or all of the rib is removed, thereby increasing the space for the arteries and veins and removing the compression. Yes, there are occasional instances where a surgery may not work and have to be repeated (just like any other type of surgery), and maybe this occurs a bit more often when artery/vein repair is involved. I may be mistaken, but it really sounds to me as if he is confusing the surgery to treat neurogenic TOS with the surgery to treat vascular TOS. So I'm confused--is his solution just to do nothing at all, wait around, and not even look into surgery? What is his plan of attack, so to speak? As for the venogram and arteriogram, yes, I'm pretty sure there is radiation involved, but I would think a small amount (your doctor would have to confirm that). The whiplash happened to me almost 6 months ago, and I've felt deathly ill since then. I haven't been diagnosed with neurogenic TOS (yet), so before the surgery my surgeon is having me see "his" neurologist for nerve studies, etc. to see if I do (this will be my 3rd neurologist). Since this happened I've had awful migraines, nausea, constant dizziness, memory problems, vision/reading problems, etc. This could be due to some tiny brain bleed or brain lesion or something like that from the whiplash and not from neurogenic TOS, although the brain MRIs I've had done were normal. You can have only neurogenic, only arterial, only venous TOS, or a combination of them.

I am confused byy what my doctors plan of attack is. Im honestly considering going across the country to Denver to see that doctor that is very well known for TOS. I dont want to play around and I want to treat it and never think about it again. I may go to my doctor for diagnosis and the doctor in denver for treatment.

I wonder if he takes my insurance or what he does for people who go to him out of state?? I believe his name is Dr bangini or something along those lines. How fast do blood clots form? Am i going ot die from this or lose a limb?

I'm assuming that you live here on the East coast or close to it. I don't think you need to resort to flying across the country for treatment at all. My doctor here in Washington, DC is excellent (I can e-mail you his info. if you want) and Johns Hopkins University has a well-known TOS center in Baltimore. I would think there are others up north (maybe Boston or NYC). But if you do want to check out other excellent TOS centers, Baylor University in Dallas and Washington University in St. Louis are two I know of. I don't think you should panic--just take things step by step. Keep in mind--there are people who have TOS for YEARS before they get any treatment or surgery.