[laura18]

Hey Im Laura, I live in Ireland and have recently been diagnosed with TOS.
I'm only 18 and have no history of injury..my symptoms started over 6 months ago; left hand EXTREME weakness, coldness and my arm is very discoloured, pain across my shoulder blade and down my neck.
Spent a week in hospital after I was sent in with a possible blood clot : clear MRI and nerve conduction studies showed slight ulnar nerve entrapment at the elbow ( could be present in normal people i was told)
sent home with diagnosis of "possibel trapped nerve" and NO treatment.

Then and osteopath diagnosed an elevated first rib and manipulated it and all my symptoms disappeared- MIRACLE!!
THis continued to happen about 5 more times, and I returned to the osteopath every time this happened!

A month ago it got progressively worse and my osteopath told me he could do no more for me and that I should go the medical route AGAIN!
Went to A&E and finally saw a vascular surgeon.. I had a Doppler scan done and that shows my arteries are healthy thank god..but could not tell if it was being compressed at the thoracic outlet with just an ultrasound,
he found a loss of radial pulse at 180 degrees and put me on LYRICA, ASPIRIN & a vasodilator PRAXILENE..
Saw his colleague two weeks later and he finally officially diagnosed me with TOS.- but he now believes it is NEUROGENIC which is really confusing me.. my arm feels like there is an elastic band being tightened around it and it is soo discoloured and weak..i cant even close my fingers HALFWAY into a fist and it is like a block of ice.. I really believe I am suffering with the symptoms of arterial TOS..

Being admitted next week for an MRI to check for extra rib ( osteopath cant feel one though) CT to check the artery and chest x rays etc.

Im so glad to find people that know how debilitating this condition is.. I cant write, tie my trousers, tie up my hair etc..basic daily activities. And as for the Lyrica..that deserves its own thread!!!
Sorry this is so long..

[chroma]

Originally Posted by laura18

Hey Im Laura, I live in Ireland and have recently been diagnosed with TOS.
I'm only 18 and have no history of injury..my symptoms started over 6 months ago; left hand EXTREME weakness, coldness and my arm is very discoloured, pain across my shoulder blade and down my neck.
Spent a week in hospital after I was sent in with a possible blood clot : clear MRI and nerve conduction studies showed slight ulnar nerve entrapment at the elbow ( could be present in normal people i was told)
sent home with diagnosis of "possibel trapped nerve" and NO treatment.

Then and osteopath diagnosed an elevated first rib and manipulated it and all my symptoms disappeared- MIRACLE!!
THis continued to happen about 5 more times, and I returned to the osteopath every time this happened!

A month ago it got progressively worse and my osteopath told me he could do no more for me and that I should go the medical route AGAIN!
Went to A&E and finally saw a vascular surgeon.. I had a Doppler scan done and that shows my arteries are healthy thank god..but could not tell if it was being compressed at the thoracic outlet with just an ultrasound,
he found a loss of radial pulse at 180 degrees and put me on LYRICA, ASPIRIN & a vasodilator PRAXILENE..
Saw his colleague two weeks later and he finally officially diagnosed me with TOS.- but he now believes it is NEUROGENIC which is really confusing me.. my arm feels like there is an elastic band being tightened around it and it is soo discoloured and weak..i cant even close my fingers HALFWAY into a fist and it is like a block of ice.. I really believe I am suffering with the symptoms of arterial TOS..

Being admitted next week for an MRI to check for extra rib ( osteopath cant feel one though) CT to check the artery and chest x rays etc.

Im so glad to find people that know how debilitating this condition is.. I cant write, tie my trousers, tie up my hair etc..basic daily activities. And as for the Lyrica..that deserves its own thread!!!
Sorry this is so long..

Sounds like your case is clearer than most. I also had the disappointing hospital visit where they could neither diagnose nor treat me. Later I read in a paper by a vascular surgeon that TOS is under-diagnosed in emergency rooms. I believe it!

One thing you have to watch out for is that the longer your symptoms go on, the more damage is being done to your body. I think you should be going to your osteopath on a semi-regular basis to "keep things at bay" until you get a better fix.

I eventually learned to do neck stretches and a first rib adjustment that mostly accomplish what your osteopath does. Now I can fix myself up within minutes instead of waiting for an appointment. Consequently, my secondary symptoms have gone down a lot.

You can start here to see what I'm doing:
http://neurotalk.psychcentral.com/post853563-17.html

Good luck!

[laura18]

Thanks for your help, I will definitely try those stretches! where did you learn how to do a 1st rib manipulation? I have been told to avoid that just until all the tests are done because knowing my luck all the tests would show up negative then b/c of the temporary relief I get from my osteopath.

I first visited him in October and got relief until December. Thought it was a once off thing that wouldnt occur again. By the end of Jan it got to a point where I was having 3 app's a week and getting a 1st rib mobilisation each time. He felt there was "something more going on" and that I should get the Doppler done etc as he felt he could do no more for me, unless he moved in!!!!

I would greatly appreciate your opinion on this, giving your knowledge of TOS.Is it possible for NTOS to cause extreme discolouration and coldness? I was aware it could cause some amount but not to the extent that I have? ( arm looks dead and extremely cold)
I noticed a difference in pain levels when I was on aspirin and praxilene and lyrica makes no difference to the pain whatsoever but my consultant doesnt think it is vascular TOS and is leaning more towards NTOS, whereas my osteopath is adamant the subclavian artery is being compressed??

From reading the posts on here I have learned that even though this feels like it has been going on forever and I have been messed around so much, that it is in fact a quite straightforward story in comparison to other TOS sufferers,( leaving out all the complicated bits of the story that came to dead ends that is). My life has been put on hold the last couple of months as I cant do anything in college without the use of my arm plus the pain obviously. Vascular TOS seems to have a better treatment outcome so I actually "hope" that I have an extra rib that can be removed and then all this be over,rather than finding no cause.Here's hoping.[/B]

[chroma]

There is a "first rib mobilization" technique on a web page that I think I posted in that thread. You can also search google and youtube for that term. I also made up one myself which I describe in that thread.

I understand what you're saying about the testing.

Re: coldness, I've heard both chiros and MDs say that's nerves, but I don't see how it couldn't also be artery.

I wish there was better and more standardized testing for TOS. I don't care if it's complicated. Make a flowchart, medical community. It's 2012.

[jkl626]

Hi, I have been reading these posts for a couple of months now and had trouble getting on this site from my home computers**.Finally I went to the Library to join.

I have been treating a disc bulge and spinal stenosis for 7 months with no results and finally got a diagnosis of NTOS a couple of months ago.I work with my arm so I have been unable to work for 8 months. I just had botox injections a week 1/2 ago and waiting for the results.I am in L.A. and have seen the same Dr's etc as many of the people on here so am looking forward to the exchange!