Thanks y'all. I freaked out because I heard that many people's TOS pain was resolved immediately. Perhaps, I have a lot of nerve damage to work through???... I went four years without any treatment and progressive atrophying...
I have started PT and they have me doing arm and postural muscle strengthening, but right now I have tingling in my elbow. Hmmm.

Good morning! Today is week 4. Things are going really well. She started p/t last week and has been 3 times. Mostly stretching and range of motion. She said that her arm gets tired, but that's it. So far no pain. It is amazing to hear her say that. This weekend she moves back to college. I am hoping that she takes it easy and doesn't overdo it. She keeps telling me that she knows her limits I think that she is tired of me "mothering her" all the time We have our check up with Dr Pearl at the end of next month. I have been keeping in touch with him by text. He is very good and will respond right away. I am so grateful we found him! I hope you all are having a great, painfree week. I am so thankful for all my friends here

If it makes you feel better TOSmom, the outcomes are much better for athletes and young people with TOS than for older people. She will probably recover well and have a fairly normal life.

From what I read on this forum I have to agree about young people and athletes recovering faster and more complete than older people who have carried TOS a long time. I am 11 weeks post op and really feel about the same I did at 3 weeks. It is better than before surgery but the lack of continued progress is starting to get me down. I will go for short periods where it feels really good but these are really periods where I have been inactive, careful and maybe just lucky. I am wondering if the only way to get better from here is to somehow address the atrophy and imbalances from Carrying this so long before surgery. However that's easier said than done. I saw some discussion on here about shoulders and scapular grinding, popping etc. mine does all of this. It almost feels like something is out of joint when I move my shoulder up and back as there is clearly bone rolling over bone. It was this way before surgery as well. If I elevate my shoulder a couple of inches to be where it should be the bone on bone goes away when moving it.

What we are really missing on here are the people who have gone through the long TOS surgery recovery road and made it. It would be great to know how they did it. Maybe they do not exist. Maybe this thing does whatever healing it does in the first three months. Who knows. I am seriously considering getting after the muscle rebuilding and toning even if it increases the pain. That seems like the only way to victory. If muscles are fully innervated it seems like they would respond. However if what is really needed is to give these nerves more time to calm down then this could be a disaster.

Does anyone have any wisdom to share regarding my thinking? I wish I could get these answers from my surgeon but I do not get the chance to see him being half a country away and i am not sure he spends much time on his patient's recoveries. Local PT people sure do not have the experience with post surgery TOS.

Dr. Donahue told me it takes a year to know where your "plateau" is. I am 15 weeks post surgery and I try to remind myself of this whenever I get uncertain. I would be concerned about throwing in new variables this early in your recovery. I did some research on on nerve surgery recovery, and one of the websites I went to talked about how patients do get frustrated at the slow pace of recovery. Just a thought, 11 weeks is still seems early.

Romans8,

Sorry to hear that the healing is going slow for you. I'm not young and I don't claim to be an athlete anymore, but luckily my recovery is going ok. I didn't suffer as along as you did before I had surgery so I'm sure that's a huge factor. I only went a year and a half with the pain, numbness, and discolored hand (from throwing daily) and I'm glad I didn't wait any longer. I still have some pain but usually not bad. There are days though that the pain becomes more intense and no amount of Advil/Tylenol will help. Not sure I can give any thoughts on the shoulder grinding and popping because I've had that going on for a while now because of my 2 shoulder surgeries. I will say that after each of my shoulder surgeries I worked hard at therapy and was able to start throwing 5-6 weeks earlier than the doctor projected. I have tried to have the same attitude and work ethic with this recovery but it's much tougher. I think you are right though about pushing muscles harder. Don't get me wrong, it's going to hurt, and at times it can scare you because each litte pain makes you think that the TOS is bak, but pushing my limits seem to be working for me. You just have to figure out how much pain you're willing to tolerate when working out.

I had an appt. with Dr. P this afternoon and he said I was progressing well. I did have a few questions for him and he reminded me that I was less than 3 months out surgery and that it takes time to heal. My concerns that I mentioned to him were: 1. Pain when I still take a deep breath (normal, just takes time to heal) 2. Numbness and tingling in my fingers again, especially after a physical activity (nerves waking up but if it doesn't go away I can call/text him at any time. 3. lack of feeling and deep tenderness around incision area. (normal) could take a little longer since muscles were cut.

I hope things start looking better for you.

Well, I am about to hit 6 months post op (in 2 weeks) and I'm doing pretty good; much better than at 4 months. Like romans8, I can provoke a flare up if I do too much. I started doing simple Pilates a few weeks back to strengthen the core in order to improve my posture and learn to start holding my body correctly. I'm trying to be more conscious of rolling my shoulders back and down when I find myself sitting or standing with my shoulders up around my ears, which is what I did for years to help alleviate the pain. I'm also working back into yoga very slowly and can now do sun salutation and downward dog without TOS pain - I found that the muscles all over my body get tensed up when I've had a day where I catch myself sitting with my shoulders drawn up and forward, which contributes to the poor posture, which aggravates the pain (still FAR less pain that pre-op). My normal work day no longer triggers evening pain (well, semi-normal; I'm still refraining from heavy lifting). Still not able to ride my horse for long without aggravating it, but he can be heavy in the bridle and that may be the biggest cause. While I'm hoping for more improvement in that aspect, I haven't needed a hydrocodone in a few weeks now; still faithfully taking my Lyrica, cyclobenzaprine and ibuprofen and that's working for now.
I have no tingling around my incision site, and the feeling is starting to return to the area. If i run my fingernail from above the incision site to below it, I can definitely tell when I cross it b/c the sensation is less, but it's there, which is an improvement. The Mederma gel has made such a huge improvement in the appearance of my scar, too; I highly recommend it for anyone who wants to lessen the apearance of their scar.
I've also had my antidepressant/anxiolytic drugs switched up again, and I'm feeling much better the last two weeks than I have in a long time, which is great.

romans8 - Although I can't speak to your specific case, I can share some of my experience. Not sure what you consider "young", but at 40ish I consider myself young and althletic! I had symptoms on and off for about 2 months before finally being diagnosed - at this point my arm was almost useless due to swelling from clotting and I had quite a bit of scarring on the nerves. The hardest part of recovery was the nerve pain - I could handle the rest of the pain, but the nerve stuff flared up frequently and was and still is there always to some extent. At the six month mark I was still taking over-the-counter meds once or twice daily to keep the nerve pain tolerable. By nine months that was down to a couple times per week. Now at one year, I don't notice the numbness as much, my hand tremor is all all but gone, I can open jars again and am exercising regularly again without too much issue. I do still find I get pain if I lift too much - for example after Thanksgiving hauling around a turkey, tables, and chairs, it hurt to take deep breaths or bend the following day - but it goes away quicker. Overall, I consider myself a success story and I hope with time you will be too.

Thanks to all four of you for the encouragement and sharing your perspectives. I need to be more patient with this thing and give the nerves time to calm down. I was glad to see what one of you said about breathing hard causing things to flare up. I had hoped I could at least ride the stationary bike to increase blood flow and maintain cardio but I seem to hurt for 24 - 36 hours afterwards. Everything in there must really be sensitive if lung expansion irratates the surrounding nerves and muscles. I wonder if the pulmonary embolism I encountered two weeks post op also is in play when I attempt cardio.

Are all of you getting some form of massage in the neck and shoulder areas? If so does this help or irritate or both? My PT seems to focus too much on the shoulder and not enough on the neck. I am pleased with my shoulder range of motion on the operative side. My other shoulder is still frozen but improving.

I have not had any contact with the doctor since November but I texted him last week to see if he could give me a few minutes over the phone. He has not responded which is disappointing. I really have been conscious not to be high maintenance for him as I do not see how he can operate this way with all of his surgery patients.

The main thing is when we workout, especially cardio, you really need to focus on your breathing. The more you breath expanding your lungs will tighten the body muscles causing flares. When I finish and workout or a task that increases my breathing, immediately after I lay back in a reclined position or down on my back and slow my breathing. Massage can be good or bad. I have had days where it was very helpful and days where it aggravated things. Just make sure you find a therapist that truly understands TOS.