Possible Arterial/Venous Thoracic Outlet Syndrome?? Please help me
 

So I have an appointment with a vascular surgeon in a month but I feel a lot of you on this forum can help me. I am so happy that I found it. I think I am one of those rare cases who has only either arterial TOS or venous TOS without neurgenic. My symptoms are quite simple but very scary. In my right hand my veins get engorged with blood as if it is being cut off. It only happens in certain positions and it doesnt turn white or blue but it kinda turns reddish a little bit? Also, when it happens its uncomfortable and I have to change my position of my arm. I have no other symptoms. It is obvious to me that my circulation is temporarily being blocked off. Im convinced I have TOS because there is no other diagnosis that does this.

I have no neurologic symptoms at all. Strange huh? The only other symptom I can think of that may be related is I get a pulsing feeling in my right side of next without touching it. I can just feel the pulsing in my body and my neck hurts sometimes. My real concern is my engored distended veins in my right hand. It is obvioius that something is wrong.

Can you have ATOS OR VTOS without Neurological TOS?? I would think that the arteries are deeper since it is more rare than neurogenic TOS so in order for arteries to be effected the nerves would be to? I have been on the computer researching for hours and hours.

Also, if I am recommended surgery I dont know what I will do because I hear it doesn't even help in fact it makes it worse??? What is a person to do ? I am only 26 years old and I dont have a job or play a sport that involves repetitive movements.

Can it be anything else? My appointment isnt until another month and I am petrified of blood clots, aneurysms etc. I recently had a ct scan of my chest to look for a pulmonary embolism from something else and it came up negative. Can ATOS cause a blood clot or aneurysm in temple of head? I apprecaite any of u taking the time to help me. I am up worried with fear here.

I'm just about to leave for PT, so very briefly:

* Cold & whiteness & deflated veins = ATOS
* Red & bulging veins = VTOS

Sounds like you have VTOS. Yes you can have only one of the three. The circulatory versions (ATOS, VTOS) do fare much better with surgery than NTOS, so you shouldn't be so worried.

Also, you could have something else. And you may not need surgery. The worst thing you can do is stress yourself out right now.

Prior to your appointment, if your symptoms act up and don't go away with changing your arm position, then you will need to go to the ER. But obviously this has not been happening to you so far. So don't freak yourself out thinking that it will.

Let us know how your exam goes.

Later.

I appreciate you taking the time to respond. I never heard of bulging veins only being the genius type ? Im afraid this surgery is going to cause more problems in the future. My arm only causes symptoms in certain positions if I dont do the positions my hand is fine. I don't believe in opening up the body unless absolutely necessary. I don't have much faith in doctors either ( long story) I don't understand with all this new medical technology the obly way to treat this is major surgery. It isn't like I've had a heart attack and need stents put it but the surgery sounds like I have had one or bad arteries etc. There's got to be another way since its not disease its just bony structures or muscle in the way. I've read surgery can make ot worse and hardly cures it. So whats the point ? I also read online in a medical journal that most online health reports don't document the failed surgeries in their literature. It's never documented so reading the surgery is usually successful is inaccurate.

Poor posture can also be the cause of your problem. Also, check for overall tension in your upper body when you are doing everyday tasks. A lot of people subconsciously raise their shoulders for no reason. I understand your concerns with not wanting surgery. I don't know where you are located cut make sure you have an experienced doctor, probably a vascular surgeon. I know there are some posts where a lot of pod doctors are listed so hopefully you will be able to see one of them. Be thankful that your issues are not neurogenic. My thoughts are with you.

I live in Long Island. Only 20 minutes from NYC. My shoulders are rounded and I tend to push my head forward. I feel if I push my shoulders back that is when I get into some problems. My hands start getting slightly red. I haven't heard that physical therapy, massage, and accupuncture curing the problem ? I feel like it could be possible. Anyone have experience with that ? Anyone else know of something else I might have? My appointment is with Dr. Roscoe in new Hyde park new York. He is a vascular surgeon. I really dont wanr surgery I have no problems but bulging veins in my hand. Just my right side. It's strange because I'm left handed but I'm ambidextrous so maybe thats why.

Have you found our sticky threads up above on the main TOS page?

Tons of info & therapies & self help ideas.

Have you had any MRI or xrays yet?
to check for compression causing anomalies in the area?
your regular dr could order those - usually of the cervical & thoracic areas

Any expert postural evaluation yet?
sounds like that is a part of your problem, an advanced PT or expert chiropractor should be able to help with this part.

(most MDs won't even do much of this hands on stuff- IMO - so ask about getting an expert PT eval or seek out an expert & skilled chiro)
You may need some skilled guidance to get it sorted out at first. but then you can go forward on your own at some point when sx have decreased .

I'd go ahead and look into this angle since it is awhile til the dr appt.

I haven't heard of the dr you mention , but that is no biggie, just be aware that sometimes surgeons prefer to do a surgery vs rx therapy & self help.

any previous whiplash or falls, anything???
gaming, texting, studying can do it too if poor postures are the norm.

I wonder if you try some of these if they help or ??

[lay on foam roll or large towels rolled up tightly - pillow if needed for neck comfort - then just relax with arms at a comfortable position]
http://neurotalk.psychcentral.com/pi...pictureid=5400

http://neurotalk.psychcentral.com/pi...pictureid=5399


make up a list of your sx & what helps & makes worse for any future appts, even odd things that you might think not related.

I didn't see the stickies and will definitely check them out. All the research I've done it seems surgery is the OnLy thing that helps Vtos or atos. So what youre saying is it possible to cure and fix with alternative therapies ? Has anyone here been able to do that without surgery who had either VTOS or ATOS

Oh yeah I had a cardiac Mri for a totally different reason that came up perfect and chest xrays before but not for this particular reason. I had a chest ct scan to look see if i had a pulmonary embolism but I.didn't. The reason for all this testing was constant heart palpitations that have resolved.

Does a cardiac MRI get good clear imaging of the spinal column? :confused:
Sems like it would focus on the heart area only and not much of the spine , unless the Dr rx'd all areas?


I'm pretty sure the ones with the constant sx and/ or already had clots happen are the ones that are urged into surgery.
If sx are intermittent there is a possibility that very good PT/bodywork and some time- not a quick fix, very rare for that. figure many months to years depending..