Hello
 

Hi All,

I've had on-going issues for the last five years, to cut a long story short; I was initially mis-diagnosed & operated on for Ulnar Nerve compression, shortly afterwards I developed CRPS Type II.

After four years of tests, differing doctors & pain management clinic appointments & getting nowhere, I ditched my GP. Up until then all they did was up my OxyContin & Failed to find the route cause of my pain.

I registered at a new practice, my new GP referred me to different specialist, after couple of tests & scans my surgeon confirmed bilateral Arterial Thoracic Outlet Syndrome.

However, his investigations showed such severe compression of the R/H artery that there was a real possibility that I could occlude the artery, which would have resulted in gangrene of my right arm (the scans also showed significant stenosis to the left arm).

My surgeon had serious reservations that this was going to relieve the pain in my arm because he felt that it has become such a complex case of causalgia / CRPS that I would continue to experience pain, even after he removed the rib (he wasn't wrong).

I under-went a resection of my first rib (right) January 2012.

I wish I could report that things are better - But five months on, the pain is now worse than ever.....

Anyone else in the same situation?

Cheers

Mark

Hello Mark,
Sorry to read of your continued pain.
Did anything improve after the surgery, did the artery compressions get resolved?
Do you think you have RSD/CRPS also or did the dr just think that was the case, that is a double whammy if so...:(
We do have a RSD/CRPS forum also if you have that along with TOS.
http://neurotalk.psychcentral.com/forum21.html

Have you studied up on RSD & TOS enough to figure out which symptoms go with what syndrome? Although many tend to overlap quite a bit.

Did it seem like the surgeon that worked on you was highly skilled & experienced ?
Was he a vascular surgeon?

The vascular surgeon was one of the best in the UK:

Mr J G Mosley B.Sc. M.D. F.R.C.S. M.R.C.P.I.H.S.M Honorary Clinical Teacher, Manchester a London Medical Schools. * Mr Mosley is the North West of England representative for vascular surgery. *He is the President Elect of surgical section of the Manchester Medical Society, also a medical adviser and appraiser in vascular surgery for the General Medical Council

I've seen approx at least nine pain consultants over the last five years, who all diagnosed CRPS, including Mr Mosley himself who in his own words said "I have serious reservations that this is going to relieve the pain in his arm because I feel that it has become such a complex case of causalgia that he will continue to experience pain even after we remove the rib".

You're unlikely to believe me but it's actually become a triple whammy, as I've also had the diagnoses of Fibromyalgia in addition to TOS, CRPS Type II. I can only describe my life as a living nightmare. I have chronic pain in both shoulders (TOS in both, confirmed by doppler scan, CRPS in right flowing ulnar decompression), a constant Flu like ache that affects EVERY joint in my body, multiple tender points from head to toe. I suffer from chronic fatigue, excessive sweating in specific points (back of head & forehead, nowhere else) etc etc where do I stop.....

The operation seemed to be a success & I was told by Mr Mosley the the blood flow had been restored. Apparently they checked with scans etc whilst I was still under after the operation. I've since had one flow-up appointment with MR Mosley in which he told me that the operation was a nightmare, as it complicated & took longer than expected.

Since the operation generally things have become a lot worse, my shoulder feels much more sore & tender; much worse than before. I've developed muscle spasms, causing me to quickly draw breath. Hard to explain, but whilst breathing normally, breath in then I get a quick spasm that cause me to breath in again sharply - It's making eating a nightmare as food goes down the wrong way.

The skin two weeks ago on my right arm started to dry in places then start peeling. As for that Flu like pain, it's more noticeable!

To be honest I'm near breaking point, I get zero relieve from pain.

Oh yes, that is a triple whammy for sure..:(
The RSD /CRPS forum has some alternative therapies things being mentioned , it sounds like that is may be the worst thing now? Sometimes surgery sets it off and spreading.

a few that I recall,
HBOT
tDCS
ketamine
there are also pain med pumps and SCS that have helped some members.

They might have more rx medications being mentioned there , or rx combos that have helped some of them.