[Haute Mess]

I notice quite of few of you describe your TOS as NTOS with a vascular component, however the vascular surgeon I saw implied you either have it or you don’t. Your arm is either near death with gangrene or perfectly fine. Basically you can’t have a "little vascular" TOS. I have a cervical rib which would predispose me to ATOS but right now my vascular symptoms are mild (weak pulse and I get throbbing near my collarbone without the lump) and for years I always felt like I had poor circulation in my arm. The vascular surgeon never performed any tests just asked if my arm was cold and discolored. I should ask for a second opinion but I am moving out of the country soon and out of time.

If you have a vascular component what is your experience with being diagnosed?

[Jomar]

Maybe he was speaking from a purely surgical point of view?? To do surgery or not? Like- If real bad you get surgery & if not live with it sort of thing????


I'd have to refresh my anatomy knowledge to delve deeper, but basically I think there can be minor, partial, full to severe for all versions of TOS.

The cause, effects, length of time gone by, good or poor PT- all can vary so much person to person.

I feel if The Dr, or an associate (possibly an advanced PT person) don't do any hands on testing/palpation - I just think they are not fully up on things...


You have good imaging of the C rib?
Any other anomalies mentioned?
Was size or possible compression of anything mentioned?
Some are small/partial some are large/full.


Have you had any other Doppler or blood flow testing?
Seems like a vascular surgeon would want those....to be sure of things...

[Haute Mess]

Originally Posted by Jo*mar

Maybe he was speaking from a purely surgical point of view?? To do surgery or not? Like- If real bad you get surgery & if not live with it sort of thing????


I'd have to refresh my anatomy knowledge to delve deeper, but basically I think there can be minor, partial, full to severe for all versions of TOS.

The cause, effects, length of time gone by, good or poor PT- all can vary so much person to person.

I feel if The Dr, or an associate (possibly an advanced PT person) don't do any hands on testing/palpation - I just think they are not fully up on things...


You have good imaging of the C rib?
Any other anomalies mentioned?
Was size or possible compression of anything mentioned?
Some are small/partial some are large/full.


Have you had any other Doppler or blood flow testing?
Seems like a vascular surgeon would want those....to be sure of things...

This was the same surgeon that said cervical rib resection was fun. She really rubbed me the wrong way and I did not feel comfortable asking for a Doppler; since we are both military I have to be careful how I respond so it doesn’t appear I'm being disrespectful. Spine ortho was impressed with the size of my cervical rib but saw no issues on my MRI. I have a f/u with vascular next week and I may just ask for a Doppler. What is the worst that can happen - send me to Cuba? LOL, already going!

[NerPain4]

Originally Posted by Haute Mess

I notice quite of few of you describe your TOS as NTOS with a vascular component, however the vascular surgeon I saw implied you either have it or you don’t. Your arm is either near death with gangrene or perfectly fine. Basically you can’t have a "little vascular" TOS. I have a cervical rib which would predispose me to ATOS but right now my vascular symptoms are mild (weak pulse and I get throbbing near my collarbone without the lump) and for years I always felt like I had poor circulation in my arm. The vascular surgeon never performed any tests just asked if my arm was cold and discolored. I should ask for a second opinion but I am moving out of the country soon and out of time.

If you have a vascular component what is your experience with being diagnosed?

Wow, it sounds like the surgeon you saw was uninformed, how did he "imply" the all or nothing VTOS? I have heard that there is disagreement amongst the medical community as to the definitions of the types of TOS and the prevalence.

Dr. Semonosky's website describes that there are various degrees of each type of TOS.

http://www.tos-syndrome.com/old1/newpage12.htm

On one of the threads here someone also posted a really helpful link to a NIH journal article which describes vascular TOS:

www.ncbi.nlm.nih.gov/pmc/articles/PMC2728415/

I have been examined by so many doctors its not funny. First off, he could have visually inspected the upper chest and neck, in TOS sometimes the area is swollen. Then he could have done a hands on physical examination of your clavicle area. Just above and below the clavicle and at base of your neck he could have felt the subclavian artery. He could also have listened to this area using a stethoscope, and infant sized one is good or even a small portable doppler probe. The stethoscope/doppler probe would be used to listen to your blood vessels, specifically your subclavian artery. He could have listened for an arterial bruit or palpate that area to feel a subclavian artery/axilllary artery "thrill", which is like a vibration that is abnormal because of turbulence in the artery because it is being pinched. A subclavian thrill is abnormal, like a rushing sound. Normally you do not have a bruit. I had a bruit at rest. I think that some doctors can even measure the degree of the bruit with the doppler device, so definitely there is a possibility of the vascular impingement being to various extents, the louder it is the worse it is I think. (Currently I no longer have a subclavian bruit because I had the TOS surgery so the first rib, scalenes and fibrousbands were surgically excised.) You might actually have an arterial aneurysm and he could have palpated and felt a throbbing pulsatile area.

In TOS, the cold and discolored arm could be from vascular spasm which is from sympathetic irritation (the sympathetic nervous system is very important and could cause Cold sensations along with discoloration.) besides just being from physical impingement.

He could have done any number of tests; Adson's test, the Costoclavicular Manoeuvre, and the "Hands-Up" test or "EAST" test. All of these tests show vascular impingement in certain positions.

A helpful diagnostic test would have been a color doppler duplex scan, where they put sensors on your fingertips and then have you do some positional maneuvers like raise your arms at 90, then 180, put your arms down and straighten your shoulders back like in military position.

The journal article above has a photo of the Doppler Duplex Scan result with someone who has vascular component to TOS.

There could also be a vascular Venous TOS called Paget-Schroeder Syndrome, which is when someone who is typically very active and muscular suddenly develops a swollen blue arm, from a venous blockage, and then they have to get blood thinners. This is I think also called effort thrombosis. I think people who present with PSS have to have emergency surgery and have their first rib and scalenes taken out.

Please feel free to correct me, but everything is described in TOS references, even wikipedia!

[NerPain4]

Another thing I forgot to mention is that some doctors take note of and inspect is at what angle your veins drain. With TOS, it takes a higher angle for the veins to drain out. So the doctor will have you raise your arm from straight down and then gently and slowly raise your arm (while you let your arm be passive) at 45, 60 and 90 and higher, the veins drain of blood and on the back of the hand/arm veins get flattened as you raise your arm. When the veins are flat, they record that angle.

Doctors take note of at what angle the veins get flat. The worse your impingement is, the higher the angle (more vertical) when the veins lie flat. They compare the Right and Left sides.

There is a specific "normal" angle when the veins should empty. (I do not know what it is, sorry!)

I hope that helps.

[Haute Mess]

Originally Posted by NerPain4

Wow, it sounds like the surgeon you saw was uninformed, how did he "imply" the all or nothing VTOS? I have heard that there is disagreement amongst the medical community as to the definitions of the types of TOS and the prevalence.

She had her assistant look at my fingers and then she asked me if I had any color change or swelling. I said not when my arms are by my side. She then explained the symptoms of ATOS and VTOS. She performed no tests with my arm in any position (my left arm hurts like hell if I raise it above my head for more than a few seconds!). That's why I feel since my arm apeared healthy she assumed it is healthy and therefore I don't have ATOS. My neurologist performed Adson's test and referred me to vascular surgery because my radial pulse was reduced.

[NerPain4]

I hope you can see a vascular surgeon who is well-versed in the field of Thoracic Outlet Syndrome.

There is a list of doctors who specialize in TOS and are part of the TOS Consortium here; my surgeon is not on this list but he has done over 200 surgeries for TOS. That is a good thing to ask, how many TOS surgeries he/she has done.

http://surgerydept.wustl.edu/TOS_Consortium.aspx

You mentioned your doctor was in the military. I think there are many competent surgeons in the military but there are many more who specialize in TOS surgery who are not in the military.

Good luck!!

[Haute Mess]

Originally Posted by NerPain4

I hope you can see a vascular surgeon who is well-versed in the field of Thoracic Outlet Syndrome.

There is a list of doctors who specialize in TOS and are part of the TOS Consortium here; my surgeon is not on this list but he has done over 200 surgeries for TOS. That is a good thing to ask, how many TOS surgeries he/she has done.

http://surgerydept.wustl.edu/TOS_Consortium.aspx

You mentioned your doctor was in the military. I think there are many competent surgeons in the military but there are many more who specialize in TOS surgery who are not in the military.

Good luck!!

I had a f/u with my “cervical rib resection surgery is fun” vascular surgeon and her bedside manner was remarkably improved! She backed me on my decision to get a scalene block and said that if I get significant relief then surgery is worth considering. At least this time she listened and gave me the impression that she is familiar with TOS and willing to work with relieving my pain whether it's caused by my cervical rib or not. Progress!

[fclegg]

Originally Posted by NerPain4

I hope you can see a vascular surgeon who is well-versed in the field of Thoracic Outlet Syndrome.

There is a list of doctors who specialize in TOS and are part of the TOS Consortium here; my surgeon is not on this list but he has done over 200 surgeries for TOS. That is a good thing to ask, how many TOS surgeries he/she has done.

http://surgerydept.wustl.edu/TOS_Consortium.aspx

You mentioned your doctor was in the military. I think there are many competent surgeons in the military but there are many more who specialize in TOS surgery who are not in the military.

Good luck!!

Karl Illig in consortium now works in Tampa Florida, connected with Univ of Southern Florida and Florida Hospital in Tampa. Operated on my neighbor. She loved him, great listener and surgeon.

[tsquaw]

Originally Posted by fclegg

Karl Illig in consortium now works in Tampa Florida, connected with Univ of Southern Florida and Florida Hospital in Tampa. Operated on my neighbor. She loved him, great listener and surgeon.

I just had surgery st the Florida hospital in Wesley chapel and Dr illig was my surgeon. loved him! He is very compassionate. he performed a scalenectomy, first rib resection, and a PDF minor release on Nov 29. it took me over two years to find a doctor who could diagnose and treat me. I thank God every day I found Dr illig.