Can redness, throbbing and hands feeling hot...

[PatioGazer]

be a symptom of TOS? Most of what I have read deals with the hands turning pale when they are held over the head, which mine do. However, when they are held at chest level or below they are red and throbbing. Could this be part of TOS?

[DiMarie]

That is my problem, the swollen, burning and deep red, almost a purple to the tips of my fingers. I get too much blood into my hands and it does not leave. The compression is worse leaving my arms then going in I guess. I have had to have my rings resized two sizes since TOS injury.

The area under the collar bone and in front of the first rib is where the major vascular and neurological bundles pass compresed in TOS. That is why I feel in the out put of blood slowing my hands are purple, or burning (too much blood not coming out), where as others may have white hands, cold (lack of flow into) as in when my hands are up, as to decrease the blood flow in...

If I hold my hands up like driving so that the blood is not going in as much, they turn cold, finger swelling decreases.

One thing that may help is supporting your arms so they don't ahng, or from using them too much. Put a pillow on your lap, and keep them in pockets when walking.
Dianne

[PatioGazer]

Interesting. I was told that this couldn't be TOS since I had the red/throbbing, etc. I also remember instinctively putting my hands in my pockets or hanging my fingers on my beltloops - just felt better that way. How you describe your hands is the same for me - blood just seems to pool in my hands too much and not circulate back out. When I put my hands above my head they still throb but usually get pale quickly and feel heavy and kind of clumsy, if that makes any sense? I've still not been diagnosed and have had many many tests/doctors/etc. (I have been around the boards here for a few years, I just had to re-register for some reason.)

Have you been "officially" diagnosed with TOS?

[DiMarie]

Hi patiogazer,
Yes I have been diagx by several doctors; A neurologist, Thoracic outlet surgeon (ret.) Dr. Allen Togut, and my phsyitrist (sp). I have a combination of symdroms to go with it along with "left side" cervical herniations. My TOS symptoms are worse the Right Side. My right side had a stretch injury during an incident throwing myself from an on coming car that hit my police cruiser as I was half in and out.

I have carpal tunnel, Fybromyalgia, I had two knee surgeries that resulted in RSD in my foot. Lumbar bulge, herniation and a tiwsted sacro-illiac.

My daughter was diagx with TOS many years ago from an injury at age 16 so I knew the symptoms I was developing after the car accident. The headaches, the arm heaviness, hand burning, traps knots, the butcher knife that was in my back, over the top of my hands, side at wrist on the keyboard when typing or peeling foods, among others. Hate driving, limited to 20 minutes, switching hands off and on, talking on the phone switch hands, drying hair is a killer....

One diagx test is the "stick em up" This replicates the area behind the collar bone and in front of the first rib as they close making a compression. Bring your arms up like you are being robbed, All the way up an back. If you do it wishy washy and tend to keep them forward, "it feels better" but does not compress the outlet. So get them up and feel it in the trap as they come back. Hold the arms up for two minutes (stop as soon as you can't) open and close your hands.

Do you replicate the symptoms? Another is hold the right arm out adn turn your ehad to look left, then try the other way. Do you feel anything. How about chin to chest or looking upward, are they giving symptoms. Depending on where the compression, the type of compression you can replicate many symptoms.

EMG/NVC testing is often difficult as it is not testing the nerves first affected by tos, it test the larger nerves that make the muscles move, not the smaller sensory nerves. For example, you feel a hot flame of a candle, the brain tells the arm to move, those larger nerves did their job. But, you touch the flame, got burnt and it is sore and red and "Hurts", this is the sensory nerves carrying pain feeling to the brain. These smaller nerves cannot be tested.

Eventually long term TOS damage can casue EMG problems, reflex, atrophy etc that are visable problems.
Some doctors test for Bruit, the loss of pulse at the shoulder area, but 1/2 of society ahs this TOS or not, so it in itself is not relaible. Other testing for vascular compression are needed.

Finding a knowledgable doctor that beleives in TOS, and understands it is rare. It is not anything like finding a neuro for migraines or ortho for broken arm. Even with migraines, they are not typical type, they are more cervogenic so the typical migraine medications do not help. There is a need for anti inflamatory and muscle relaxants.

I use 5 mg of valium for muscle relaxant, up to 10 mg if flaring, and maybe skip a day. Topomax, 25 mg in Am and 50 mg in PM.....built up from 25 mg in the begining. Torodol as an anti inflamatory for flares. I also have pain medication as needed, and use trigger point injections.

After all these years, I know at what level I am to let the doctor know my need, when I need trigger points, what dose of meds work, scripts of aqua massage, I bought a hot tub, have managed to stay out of the ER for pain for several years now.

Welcome back to the forum, Have you decided on a doctor for diagx yet. How are your medications you take working. Sometimes if you are diagx for the symptoms you complain of, they help the TOS symptoms.
Dianne

[PatioGazer]

Thanks for the info Dianne. I have been to many doctors since this began in 2001. Many tests, many doctors, no answers or real help. I don't know if I have TOS but I do feel that somehow much of what I have is related. I have c-spine issues (arthritis, some herniations, narrowing of spinal canal, etc.) as well as low back problems. Right now I am trying to deal on my own working with trigger points and I find that I get some relief for neck and other pains working them. I really don't take any meds for what is going on with me since no one can tell me what it is and the meds I've tried have not really helped.

I don't have pain so much as throbbing/heat and a weakness/clumsiness/shaking which is worse when I try to do things like fold clothes or dry my hair.

I have been off of the doctor merry-go-round for a couple of years and am thinking that maybe it's time to try to get my life back again. I remember reading about Dr. Togut when I was around before and am disappointed to hear that he has retired. I live in PA and he was (relatively speaking) within driving distance for me. He was really good from everything I remember reading.

[DiMarie]

Although retired, Dr Togut still sees patients. He takes a great deal of time to diagx, especially when there are issues with cervical, you like to know what is cervical and what could be brachila nerve bundle problems.

If you wish to visit him call Emily at 570-824-2500, in Wilkes Barre.
Let her know that Dianne from the forum had provided the number for her to get you in if you like.
I hope you find answers,
Dianne

I forgot to add, his first visits are long, about two and a half to three hours for a detailed history and detailed exam...