I was diagnosed with TOS on right hand side in October 2010. It was caused by a very large Lipoma, a benign fatty tumour, nestled amongst the nerves, tendons and muscles in the right hand side of my neck, going into the thoracic outlet.
My surgeon reported that it was the size of an orange and had compressed everything in the thoracic outlet area. I had all the usual MRI’s, scans and neurological tests, but they were more to exclude things rather than to diagnose.
I started to present with symptoms on my left hand side as well and there was some talk about a rib resection, which I wasn’t pleased about and refused.
My surgery was in August last year and was successful but scar tissue has now grown, and less than six months later was already causing more blockages around the subclavian vein and more hurties in my arms than the original tumour.
I now I have to have the 1st rib resection to make room in case of more scar tissue growing after this second operation in the same area.
The issues I originally presented with included:
Cutting pain across the lower thoracic area of my back;
Tingling fingers, couldn’t drive, keyboard or use a mouse with discomfort;
Cold, sore arms and sore armpits with the sensation of blockages and lumps that stopped me from sleeping or lying on my side. Could not carry milk bottles or groceries in the end;
Collapsed shoulder;
Twisted spine and pulling on nerves at the c4/c5 area;
Lots of anxiety flushes that I could not control, I started to road rage out of my frustration;
Constant, radiating pain from between my shoulder blades, even my special chair provided by my workplace could not help with the discomfort that caused;
My arms ached with any kind of use, drying the dishes, cleaning teeth, showering, preparing meals;
I could click joints, my head would click in my neck just from looking up from reading or keyboarding and looking at my screen. Even pushing my glasses up my nose or turning a page in a book, not every time, but with a frequency and loudness that could entertain.
I have been reading this forum for sometime now and it has given me the confidence to go ahead with the second surgery after Easter. I would like to thank everyone online for sharing their stories as they become empowering to others.

I thought you couldn't drive, or perhaps there's another meaning for "road rages" in Australia?

Hi Limoges,

The context you might note was without experiencing discomfort, so if anyone shared a gesture with me over travel space, i was happy to return their getsure with one they understood.

"Tingling fingers, couldn’t drive, keyboard or use a mouse with discomfort;"

I understand completely, Blurto! I hope you find some relief. Of course I think you and everyone else with TOS should come to Boston to see Dr. Donahue instead of wasting their time with other doctors.

Hi, I am new to the site. What is special about Dr. Donahoe? I am on the West Coast.

Dr. Donahue is smart, skilled, and super nice. He does a large number of TOS surgeries and has a high success rate because he chooses his patients carefully. He only operates on a small number who he believes surgery can help. He has an amazing team of people around him, and he actually cares about his patients. I cannot believe how lucky I am to have found him.

I certainly second Limoges' compliments of Dr. Donahue. I had a rib resection and scalenectomy 4.5 weeks ago with him, and I have been so impressed with the care received from him and his team at MGH. I'm set to have another surgery soon, and I couldn't feel more confident in his care.

Blurto - coming to Boston would probably be a hassle for you, given you live in CA. However, if for some reason you want to look beyond your area, I would absolutely recommend Dr. Donahue.

Sorry to Hijack Blurto's thread....

jkl, use the forum search to find more threads regarding "Donahue".

If you want to travel away from SoCal also consider Denver and St. Louis (search "Brantigan" and "Annest" in Denver). After reading this paper by Drs. Roos and Brantigan I was ready to jump on a plane to Denver. I ended up not going because I want my surgeon nearby in case of complication and for follow up. Robert Thompson at Washington University in St. Louis has a very informative website - http://surgery.wustl.edu/tos/TOS.aspx

Blurto,

Are your TOS symptoms just on one side or both?

A highjacking.. aarrgghhh...

ladylaura418, thank you for invitation to Boston, but I'm here in Australia and don't have time to get my passport in order!!

Seriously though, my surgeon here in our National Capital is the professor of vascular surgery at both local Universities, I know I am in good hands. He has a dry sense of humour, which we share, and he likes to operate, as he tells me regularly, and I think he really does because when he was describing the size of my tumour to me, and how it took two hours to dissect it from around everything, he had a glint in his eye and a twisted little smile. I was really pleased that he enjoyed it!!

nospam, the TOS symptoms presented on both sides, about 70% on the right side and 30% on the left. This confused the doctors as it wasn't 'traditional' but we found out what it was during surgery. The nerve issues have gone away thank goodness, but the scar tissue has caused a second occurance around the subclavian vein and other nearby blood vessels.

I am a little concerned because of the equal discolouration and pain in both of my arms, this time it is equal. I have an expectaition that both ribs will be assessed for removal, I'll find out on the tenth of this month.

While everyone has discussed their surgeons, what do people think about the quality of care from their nursing staff? My first surgery was a five day stay in hospital and the standard of care varied each day. I even had a nurse try to remove my drain from my neck without cutting the stitches that were holding it in place!!

How has