Hi everyone,

After almost a year and a half of battling doctors I was diagnosed with neuro TOS in March by Dr. Vemuri at Barnes in STL. His nurse didn't seem very convinced it was TOS..but he was sure. My I had numbness, tingling, motor skill issues, and weakness. Didn't experience a lot of pain. I also exp dizziness, pain in the eye, and headaches on occasion. I had my surgery with Vemuri in May. He said my pec minor was huge and my scalenes were enlarged. He was sure I was decompressed. He was leaving for MI States new TOS unit a couple of weeks after surgery and I would be under the supervision of Thompson. At 4 weeks I still had the same symtoms along with the swelling and couldn't raise my arm by myself. I saw Thompsons NP at
4 weeks. She didn't seeem too concerned with anything and ordered PT. PT was rough. I started walking..slowly getting up to 2 miles a day at 8 weeks. Started sriving (left handed) around then. At about 10 weeks I was up to about 4 5 miles per day. I still seem to have positional problems. Symptoms increase laying down. At 12 weeks now I'm getting concerned. While stretching or yawning laying down my arm/hand shakes. Sonetimes it does while sitting and yawning. I saw Thompsons NP on Thursday. I told her about my on going symptoms. Didn't seem concerned about my symptoms. She said I still had some swelling in the neck and incision area. That was why I was probably still having issues. She said I would probably have to lie in a recliner for now and wanted me back on muscle relaxers. She was hesitant on releasing me to work (desk job) but I felt like 12 weeks was long enough. She said to continue therapy and that it takes some time to heal. I go back to PT thw 25th after not going for almost a month due to insurance issues. I've still been walking a lot and doing the therapy exercises everyday. My concern is the positional issues lingering. My posterior scalene is still tight and that incision area is still a little tight. My range of motion in my arm has gotten better..but still cant fully raise it on my own. I know it's early..but does it sound like a successful outcome? Did anyone still experience positional problems for a while after surgery. I'm scared I'm still compressed. I just hope my post scakene/incisiin area is the culprit to my issues lingering like Thompsons NP said.

Did he remove the top rib also, or only addressed pec minor /scalenes ?
NTOS mostly?
Nerves can be a pain.. even after surgery...months - years - plus sometimes internal scar tissue later on...

Rib, scalenes, and pec minor. I'm really nervous. Seems like its getting worse. Maybe I'm doing too much? Posterior scalene is still lije a rock from surgery.

Are you having range of motion problems? Like you can only raise your arm out to the side to a certain point? I ended up with frozen shoulder from tos, the shaking when yawning sounds like what I had. Seemed to let up once some of the frozen shoulder was gone.

Hi Blackstar,

I am having ROM issues..but it's not frozen shoulder according to Thompsons Nurse. I can't move it above a certain point..but I can do it assisted. My PT noticed my scapula isn't rotating like it should on that side. When I raise my arm to the side it feels like it pinches at the pec incision and coracoid process in the shoulder. My PT doesn't really seem to know. She thinks it's a mechanical issue..but how could it be if this happened right out of surgery. I hope they didn't damage my thoracic nerve.

Hi! It is awesome that you are walking! Walking helps with the pain a lot!!! I found that post surgery if I swung my arms it irritated me, but now 2 years later, I have been told I don't swing my arms enough when I walk. At first I got a vest with pockets to put my hands in so I didn't swing my arms and irritate things. I am just NOW considering returning to work at a desk job and was approved for Social Security Disability.

I found a physical therapist that did manual release - basically he rubbed the knots out of my shoulders so that I could otherwise function. This worked really well, because it keep the muscles relaxed and then were able to develop in the proper position as I developed new muscles. Stretching the neck to either side (ear to shoulder using hand to pull on head a bit) will help stretch the middle scalene. But here is what has been the golden ticket for me post op - botox injections of the middle scale. It is sucks because I have to fly to Boston every three months to get it done, but they are awesome there. You might look into getting the botox injections of the middle scalene, but make sure that the doc has done it before and knows what they are doing because it is a difficult muscle to reach - don't be anyones guinea pig.

Also, there is an amino acid that helps with nerve pain more than any RX I have been given, it is called R-alpha lipoic acid - the "R" is important. I tried it after reading a study online about it helping with nerve pain. Anyway, I take 4-6 pills of this a day and it keeps the nerve pain to a tolerable level - what ever that is lol.

Oh, and one more thing, get some Bio-Oil and rub it into your scar, neck, and area around the scar. Massaging like that will help prevent scar tissue from builing up, so it is very important. If you don't have Bio-Oil, you could try olive oil or some other kind of oil, but use it to massage the scar/side of theneck area several times a day.

You may have some inflammation that is causing you to have sympoms, you might look into an anti-inflammatory medication like Advil or OTC something like Mobic, or I actually have a supply of Ketoralic for flare ups.

Anyway, hang in there, and don't go back to work until you are feeling up to it if you can afford it.