Thoracic Outlet Syndrome Support Group

IF you do indeed have an extra rib which is compressing the nerves and arteries, no ammount of PT/OT or anything is going to help. The only help for a Cervical Rib is surgery to remove it.

If there is no cervical rib, then PT/OT and all that does help in 99% of TOS suffers, but it takes a VERY long time.

Other things that might help...although I don't know if they would be a good idea with your other conditions, so discuss with your medical providers about it!

Massage, chiropractic adjustment, ultra sound, E-Stim, Lyrica or Neurontin (sp? on that), acupuncture...um that's all I can think of. I'm willing to try just about anything at this point, and HAVE!

What kinds of testing have you had to DX your tos? Have there been any x-rays of your chest to determine whether you have a cervical rib? Also, I would recommend (if you haven't) having nerve conduction testing done. I'm told they can locate exactly where the nerve has a problem.

Also...MRI would be good, to rule out any issues with your neck.

Good luck, hon...I'm here for ya.

Oh..and no...my arm doesn't feel heavy at all...unless it's totally "asleep". The usuall feelings there is pain, numbness, less strength, and being really cold.

i have had a nerve conduction study which was just one of the most painful tests. they also did an ultrasound of both my arms held up and relaxed down. they told me i have thoracic outlet. because i don't have insurance- they did not do an mri. i'm surprised they did not do an x-ray of my chest and thoracic area to see if there is indeed an extra rib. the dr.'s just sent me to therapy for special exercises to do.


What kinds of testing have you had to DX your tos? Have there been any x-rays of your chest to determine whether you have a cervical rib? Also, I would recommend (if you haven't) having nerve conduction testing done. I'm told they can locate exactly where the nerve has a problem.

Also...MRI would be good, to rule out any issues with your neck.

Good luck, hon...I'm here for ya.

I think that this site will help you with resources and links, but how others have dealt with similar issues.

Thought we could help.. http://dailystrength.org/groups/ne...

Where are you at now with the pain?

hu there, to your questions above: Yes, I do feel weaskness, and extreme heaviness only when or just after say when I fall asleep and put any even mild amount of pressure on my arm as I sleep, when I loose nervous and vascular signal as I sleep, and my arms are without enough oxygen for long periods of time as I sleep. I have to wake out of my sleep in extreme searing pain, and my arms feel as though they are dying and going through rigor, they are stiff and at first I feel nothing, no sensation, then as I massage the circulation back into my arms, the extreme searing pain comes on quickly, as the blood pools back into my arms.

And for hours after I loose circulation in an arm, or both arms, they feel very heavy and weak and fatigued like you mentioned, this is my experience, it seems different for everyone who has this condition, there seems to be a lot of grey matter in the symptoms and varying levels of TOS, some have more severe TOS, I'm not exactly sure of how this may help you, but nevertheless, I do understand your symptoms, they are similar to my own, but I definately feel my TOS the worst through the night.. Hope this helps you in anyway~

As for some form of treatments, I've heard of surgeries and exercises, and physio, and some other types of treatments, like botox in the armpit muscles, but for me I have tried none of these, I don't believe in the drug industry personally, and only now am I realizing that I may need some form of treatment to ease the pain as it is getting quickly progressively worse, but I want to seek out herbal and chinese medicines rather than drugs and seek out some answers there, so I will get back to you, I believe that there is a natural alternative, to our problems so as soon as I find out anything that may work for me I'll email you~

~Candi

Yes the nerve conduction study is horrible isn't it? And what's worse, many experts feel that it's not accurate as it can only test certain nerve fibres & not the whole nerve. I had one done and it showed that I had no nerve damage. This is consistant with TOS (as the problem is in the muscles) but I felt certain I did have nerve damage. The test left me in bed for 5 days with arm spasms & twitches. Since then, I have had a thorough assessment by a top pysio who says that I have nerve damage in both my ulnar & medial nerves. This is jsut a lesson that you have to take these tests & Drs. You have to taker these conclusions with a grain of salt

Even MRIs can miss things. A study of people experiencing symptoms after car accidents were given MRIs & only 40% came up abmormal. Afterwards all the subjects had exploratory surgery which showed abnormailities in almost 100%- meaning 60% of the injuries were missed by the MRIs.. You need to become your own health advocate. I guess if you have to pay for the services this is difficult, but if you ahve TOS, it's not going away on it's own. Don't feel overwhelmed but understand that these things are complicated. You need to push for the answers.