I am so sorry to hear your are not doing better. I was surprised to read that Annest did not remove the C-rib or 1st-rib in surgery. I would guess those structures increase the chance of recurrence due to scarring.

I had an excellent recovery from my transaxial 1st-rib resection, but eventually began to regress. Once the symptoms began to recur, nothing Dr. Ando or Spousa did gave any long term benefit nor did the home exercises which included nerve glides (so I stopped therapy). I'm on Valium and 2400mg of Neurontin for now (Percocet when things get really bad). The only other thing that helps is sleep, hot showers and baths. I will likely have supraclavicular surgery very soon to complete the scalenectomy and clean up scarring and anything else that could be causing compression.

When I was considering travelling to Denver for surgery, I chose Charles Brantigan over Annest. Would you consider a consult with Brantigan (over the phone to start)? I've been told that he likes complex cases and fixing other surgeon's messes. That would be my next step if I were in your position.

If you come to So Cal to see Dr. Ando let me know and I will buy you Coffee or Tea.

parbie, can you tell your long thoracic nerve is damaged? are you limited in your movements?

im pretty sure i hurt mine on my right side..yrs ago, i NEVER recovered. just looked in the mirror and the stupid thing still wings even though i strengthen every day.

Thanks Stos2. So good to hear you are off your meds and doing well! I am re-considering going out there. I have been wanting to go back to work so badly that I recently had 2 back to back interviews in a day for govt jobs and the driving around (about 2 hours total) put me in SO much pain. I was just a passenger I am still avoiding driving. I am re-considering a second surgery on the same side at this point so I may go out there to get opinions, and in that case I will def see Art. Are you planning a trip down anytime soon? Glad you are back, I will give you a call/text soon.

Hi Marc,

I also still do not understand why Annest did not remove my c-rib and although I'm no surgeon, my gut is telling me he made a mistake. By removing just the fibrous band, I believe the chances of scar tissue and more bands forming are higher if the rib is still in there. In addition, although Annest simply looked at my shoulder blade and said "aren't you ecstatic, your long thoracic nerve is healed" because the winging was pretty much gone according to him, I do not believe just looking at it can give such a conclusion, especially since I recently had lots of pain in that area when I was off one of my meds. I am also on Valium and Neurontin, as well as Norco and Cymbalta and Naproxen. I tried to get off them but I went through hell with the withdrawal symptoms to I went back on. I am going to get some new opinions for sure, trying to make a list of Drs to have an initial phone consult with. Any input on surgeons that people have had great results with would be appreciated.

I will call Dr. Brantigan but I already had a phone consult with him last time and chose Dr. Annest because Brantigan said he would leave a stub of the rib and I did not like that part of his plan. He may also not want to deal with me considering I chose Annest over him the first time :S I prefer to get the surgery done out here in Cali, maybe go down to S Cal since there are no surgeons up here I would consider.

Right now, I am just continuing physical therapy and while I am starting to feel better at times, it never lasts. I also really need to start working on not pushing my limits (example, my computer use). I am seeing Dr. Ellis again this coming week he wants to do a full eval and he is really pushing for the heparin injections, and I am beginning to consider them. He says there is no risk except potential bruising. The injections are done over a course of 6 weeks. Both Dr. Annest and Dr. Sanders said that Dr. Ellis is a great doctor and if there is no risk, I should give the injections a shot. I kind of think they just don't want to deal with me any more since I did not turn out to be a successful case. I also have a lot of pain in my occipital lobes that causes me migraines and wish I could find a solution for that.

Are you getting your surgery done with Dr. Angle again? I really liked him when I spoke to him via phone last time and am thinking of calling him as well.

I recently read your post that you are going through with the surgery, so again, I wish you the best!

I could tell it was damaged visually with the winged scapula, and also with the increase in pain, and yes I was and still am limited in my movements with my right arm/shoulder. Dr. Ellis said it seems like my nerves heal well since my long thoracic nerve "appears" to have healed, although I am seriously questioning it is fully healed. And if I press down on my shoulder blade or scapula, I get immediate symptoms traveling to my neck and head and down my arm.

I think what helped with mine was the manual therapy so maybe try that instead of strengthening? Strengthening is usually the last part of the healing process so if you still experience pain and limited movement I would suggest trying that.

Yes, my surgery is with Angle. He still considers Gelabert a mentor and speaks to him about the tougher cases. I went with Angle over Gelabert because of accessibility. Angle answers emails and return's calls in a timely manner. Gelabert has residents to train and more on his plate. We also love the St. Joseph's hospitals. The UCLA system is tougher to navigate. I will let you know how my secondary surgeries go.

I believe Angle would send you to Gelabert if he felt he could not handle your case.

Thanks parbie

I have full range of motion now but I didn't immediately after the injury

Sometimes i get this deep side neck and or armpit ache but it cant be from compression i dont think... Not enough muscle..unless its just the lack of muscle (drooping and gravity)

Good luck with everything

Dr. Kevin Plancher is pretty top-notch. If he can't help you, I'm sure he can help point you in the right direction

What kind of DR is Plancher and where is he located? Never heard of him through all my research. Is he a TOS specialist?

Hello fellow TOSers! So I think an update is due and also I am at another point where I am on a surgeon search AGAIN.

Dr. Ellis basically dropped me as a patient because he said he felt there was nothing he could to do to help me. Honestly, he dropped me because I kept hesitating about getting his heparin injections especially when I had 2 drs tell me that heparin in my neck could cause brain bleeding. After hearing that and after everything that has been going on since my unsuccessful surgery in August, I did not want to risk making it worse with a non FDA approved procedure that 0 other Drs do.

Anyway, this lead to me to find myself a new physiatrist. I was in denial about my TOS (sort of). I mean I have been consistent and vigilant about my daily PT exercises with my great therapists in SF (Red Hawk PT). But just like before surgery, PT only helps temporarily and although my flares do not last as long as before they are still pretty bad and I have new symptoms and am definitely worse than before surgery. I also have been getting worse on my left side.

So my new physiatrist saw me 3 times to decide whether she wanted to take me on as a patient. She ended up doing 4 cortisone injections in my shoulders and I got worse (didn't think that was even possible). I couldn't do my regular PT for several days and even now I have to be really careful with it. I am experiencing a lot of SCM pain and pec minor pain (nerve and muscle spasms) on the right) and I recently triggered more symptoms on my left side while doing a neck stretch. I want to type more details but my right hand is beginning to get very symptomatic. Anyway after the poor outcome of the injections, this DR said I have no alternative and need surgery. I really wanted to avoid it but then I realized I NEED to find out whether Annest should have removed my extra rib and what other surgeons think about that.

If I do go through with surgery too get the rib out and scar tissue, I will also be doing my left side because I know the longer I wait to operate on it the less likely my recovery will be positive. I also need to find ways to minimize scar tissue development since that seems to be a major cause of my recurrence and worsening of my symptoms.

Also, new Dr says my winged scapula is still there and therefore guess what, ANNEST WAS WRONG. He dropped me as soon as he followed up with me realized I was worse and wanted to make sure the nerve he injured was healed even though it is not. It is healing, but not there yet and I had a feeling he was wrong because I still have tons of pain there.

Anyway, long story short, on a surgeon hunt again to have Annest's mistakes fixed and for my left side as well. I wish I had an alternative but doing PT that helps only temp and taking tons of strong meds are not what I want to settle for the rest of my life. Also my time in CA and the US are limited now as I no longer working so I figure instead of trying to go back to work and making everything worse, more surgery makes more sense and then I will return to Canada to recover for a year or so before coming back for work or my PhD (fingers crossed surgeries go well this time in order for either of those to happen).

I am waiting on a few surgeons to get back to me, some want me to fly out and see them in person but travelling is very painful for me so I am trying to do only phone consults first. I am seeing Dr. Jason Lee in person on the 24th since he is the only surgeon in the Bay area I would consider. Then I will go from there. I really like Angle and since he is a very short flight away he is one of my top choices. I am also trying to get in touch with Pearl in Dallas and Donahue in Boston, Gelabert in LA and finally Johansen and Ombrellaro in Seattle. Oh and Brantigan too, took Marc's advice and am trying to get a phone consult with him this week.

If I do go to SoCal I think I should def see Jordan first before going through with surgery but I am also like I mentioned earlier, not working and do not have tons to spend on consult fees as I am paying for COBRA ins and everyone knows how expensive that is.

Any opinions/advice/comments are welcome and much appreciated!

I wish every fellow TOSer the best, hope you are all doing better than me or on the path to living a pain free (or somewhat pain free) life