[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.

[Leslie87]

so glad I found this. I'm sure my story is similar to others: after years of symptoms and dealing with pain and doctors telling me I had everything (or nothing) under the sun, I was finally referred to a vascular surgeon whom I saw last week. Today we did a scalene block... I'm worried since so far my smyptoms haven't gone away while I have heard fantastic stories of people feeling like normal... we'll see what happens.
Happy I found this group! can't wait to learn more and talk to others about this. I think that is the hardest thing sometimes.

Leslie

[Jomar]

Hello & welcome,

Please copy/paste your post from here, or make a new thread on the main TOS section.
Sometimes we don't notice new members that only post in this thread.

And it works best to carry on conversations on the main TOS forum section.

here is the main TOS section -
http://neurotalk.psychcentral.com/forum24.html


New members can make a new threadfor themselves here-
http://neurotalk.psychcentral.com/ne...newthread&f=24

[Blurto]

Hello everybody,

I am a 52 yo male and i am pleased to have found this wonderful forum that I wish I had found some time ago. I live in Australia and we have the same issues with access to medical treatments as other countries, so you find good professionals, you want to hang on to them!

My TOS was diagnosed late 2010 after i noticed periodic slashing pain in the lower thoracic spine. I was ultimately diagnosed with a very large tumour in my neck (RHS) that had grown amongst the nerves, muscles, tendons and had compressed all the tissue in the right thoracic outlet area.

This resulted in the tingling in the fingers, cold and painful arm, collapsed shoulder and it was twisting my spine. Needles to say, I became quite precious at work, and everywhere else.

Surgery was successful but five months later scar tissue has grown and created much the same symptoms as before, and now my surgeon says a 1st rib resection is his next step, along with clearing the scar tissue as best he can.

I have been resisting this step until now, and after finding this forum, I now have the confidence to go ahead with it, as I do not feel so alone anymore.

I look forward to following all the posts of the most recent surgeries and happy to post my own experiences if anyone would like to follow.

[nospam]

Blurto, welcome

Very unique case. Is your TOS is just on one side? I'm looking forward to following your progress.

[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!

[hsulcsw]

hi im laurie. injured 4 years ago at work, off for two. TOS caused me to adopt a lean to compensate for not being able to support my shoulder and i a strain of my sacroilliac joint. WC sceduled surgical consult for TOS but my primary doc is telling me never to allow them to operate! Confused as how to proceed! I just want my life back



I copied this to the main section of the TOS forum for you -
here is the link to it- Jo*mar
http://neurotalk.psychcentral.com/thread167776.html

[moltra]

I am a 45 man, I started having neck pain back in 1995 while in the US Navy. The navy dit xrays and mri's and all they thought I had was a vertibre in my neck that was not moving correctly. The did PT and traction on my neck. I also started to get tingling and "numbness" in my ring and little finger on both hands.

I got out of the USN in 2000 and filed for disability compensation with the Veterans Administration. I was initial rated at 20% due to the neck stiffness and Arthritis in my neck.

I was seeing a xray done for a normal work physical around 2002 and the xray technician came back in the room after taking my xray and asked if I had staves in my collar. She did not ask my to take off my shirt for the xray. We checked and saw that I did not have staves in the collar. I took a copy of the xray to the VA doctors and they decided that I had TOS due to extra 1st rib bilaterially.

The symtoms tingling and numbness and limited neck rotation at times, kept getting worse, until my doctor and I decided to remove the right 1 st rib to give the nerves more room in 2005. After the 2 hour surgery the doctor told me and my family that the nerve did not go straight through the muscles like it suppose to, rather is is wrapped all in and around the nerve. I had a huge improvement on my right arm. I only have problems with my right arm if I try and do something above horizontal with the right arm.

After I had this surgery my left arm starting to bother me more and more. numbness, burning, feeling like it was asleep for months on end. So in 2007 I decided to have the left 1st rib removed. I had relief for about a month then it came back hard. I then read an article about how the minor pectorial muscle could be pinching the nerve, I talked to my pain doctor and he gave me a shot in the mucle and the pain went away almost instantly. So I had my left minor pectorial muscle detached in 2009. I had relief for about 3 months, then the symptoms started coming back more and more. My right arm is still almost normal, but weak, my left arm hurts me almost of the time now.

I have also developed athritis in both shoulders due to the not moving my shoulders fully.

So I have 3 scars on my shoulders and chest from the surgeries and stll in alot of pain. I can not let my arms stay in one position very long or they start aching from the athritis, but If I move them to much the TOS kicks in. Especially the left. For the past 5 year the majority of the work I do has been on the computer so that make everything worse. I have a request for increase in my disability from the VA, and I am starting to think, if it is increase of just giving up working and trying to survive this pain. I cannot stand not being busy so If I do this it will be a big change. I am sitting here, almost in tears because my left are is burning and I had my arm just barely touching a notepad and I had to move the notepad cause it felt like a knife cutting my forearm.

sorry if this was a long post, had to get some of this off my chest. which hurts all the time from the TOS and surgeries. I have routine stress tests annually and had a left and right heart cath this year cause I have two of the symptoms of a heart attach almost daily.

Mark.