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.

Blurto - Tumors causing TOS are incredibly rare. I had a large bone tumor (benign) on my 1st rib which I've heard is rare. They took the rib and tumor in the same surgery. I hope your rib resection surgery relieves your symptoms.

I have recently found some good information about the variations of rib resection according to TOS type. This was from the Washington University School of Medicine's Thoracic Outlet Syndrome Center. It is not overwhelming with information, so no information overload, it is focused and carries enough for you to grasp your situation and to see the possibilities open to you.

I also looked at a really good video on YouTube about 1st rib resection for venous TOS. Search for First rib resection for Paget-Schroetter Syndrome by VascularUAMS, University of Arkansas. Its a beauty!

Hi everyone. Its been an interesting week on the forums hasn't it!! My turn is coming soon. My rib resection is booked for Tuesday the 24th April and it has come to a point where I am looking forward to it for some relief.

The second time in the same place for me, I was well armed with the thoughts and suggestions from everone here and was able to present to the surgeon knowing that I knew a lot more than last time. So, I got more information in return but interestingly, he asked for the names of these forums for his other patients, because I had told him how much support you find here.

If any one is interested, I have posted some images in an album in my profile of my first surgery. The images show exactly where the first surgery was. I'm told I will get a Y shaped incision under my right clavicle this time around, from my sternum, and then back.

So, if you like unusual pictures, everyone is welcome to have a look in the album in my profile.

Sheri, I had a bone tumor (benign) removed from my humorous a few years ago. I wonder if some people are just more prone to bony abnormalities like this. You had mentioned that your first rib had a similar anomaly to mine.

Blurto, I'll "talk" to you before then, but I'll be sending good thoughts your way on the 24th. Not to dismiss the seriousness of the surgery at all, but I think you and LadyLaura, and Nospam will be at an advantage for your 2nd resections because you'll sort of know what to expect.