Hi everyone, I have been meaning to post an update and unforunately I can't post the full thing right now (too much pain). I have been from California to Boston to NYC and I am exhausted! But on an end note, surgery is scheduled with Dr. Donahue for July 18. Will post again with details soon.

Hi all,

So I am finally home, feels weird calling my parents' house home after 10+ years! But slowly settling in before surgery which is in exactly one month. Dr. Donahue is amazing as most of you already know and I really do feel like I am in the best of the best hands and that is pretty much the only thing keeping me from running the the other direction from this redo surgery.

Dr. D spent 2+ hours with me even though he had been through all of my results and history over the phone lol, he actually veered off talking about TOS and how little is known about it once I brought up his book and it was so interesting watching and seeing how interested he is in TOS and everything about it. He is absolutely nothing like any doctor or surgeon I have ever met and that is what I love about him. He is not egoistic, he REALLY TRULY cares about his patients, not his own interests or making money off of you, and he does what is best only for you and only if he really believes it will help you. After going through my lengthy history, we did some of the TOS maneuvers and I could not finish most of them and he did not even make me do them all or finish them because he could read it off my face how much pain it was causing me. He said he was so impressed that I could even function and that I flew all the way from California on my own considering how bad shape I am in. He said and I quote "you are in the top 5% of the most severe cases I have ever seen". My response was "wait, let me get this straight. So, I am in the .002% of the population with cervical ribs, out of that, I am in the 10% that get TOS, and now you are telling me I am in the top 5% of the worst you have ever seen?!?!?" Yea, pretty crazy. Even I didn't think I was that bad, but I guess once you live with this for years, you develop a crazy high pain tolerance and don't even know what "bad" is anymore.

We talked about several other things, including the risks of a redo surgery vs a first surgery (which he said are higher, but not by much) and that his main concern with me was my long thoracic nerve injury (caused by my wonderful prior surgeon). He also noted that he was surprised about that injury because it is apparently very uncommon during a thoracic outlet decompression if you know what you are doing. He said in addition that the scar tissue was definitely not the main problem or even part of it as it develops no matter what but he uses dura to coat the nerves to prevent the scar tissue from attaching to the nerves post op and also believes out of a bunch of things I named to prevent scar tissue, that toradol is most helpful and he would give me that. He said that my cervical rib is definitely the main problem and should have been removed (like I have been thinking since the second I awoke from surgery). I asked about why I had so much burning pain in my surgical sites if it isn't scar tissue, and he said it is quite possible my small cutaneous nerves or skin nerves are permanently injured (thank you again prior surgeon!). He also said it is odd where my incision was and it was supposed be a bit lower, and he would go in below it or possibly below my collarbone (I told him he can give me as many scars as he wants because all I want is to get better, even a little). My accessory phrenic nerve also makes things a bit more complicated because they are in the way.

He said my chances of improvement are at 75% at most because it is a redo and surgery will be long because it is more complicated, 4 to 5 hours or maybe more, and that my recovery will be very long and painful (I am taking a year off of life to properly recover and devote everything to recovering this time). He said he will 100% remove my extra and first rib and make as much space as possible plus any scar tissue.

Also, I mentioned the nerve pain and tingling down my right leg which directly connects to the raising of my right arm or leg and was wondering what that was, he says it is likely no real pain but my brain thinks I am having pain there because of the severity of my TOS symptoms and that this will heal in 10 to 12 months following surgery.

He said based off of everything, he would still first want to have me do the specialized CT scan at MGH (which I did the next day) and then would likely offer surgery because it wasn't as if the CT scan would tell him I had TOS or how bad I was, he already knew that. He just wanted to see what was going on inside to see the difference between my first scan and the new one. On Sunday, he called me and said he had seen all he had to see on the scan and offered me surgery and felt it was reasonable to do in my case and we scheduled the date.

Also, I want to note, I asked him about why he doesn't recommend PT post op and he said he wants to be clear (I am sort of speaking on his behalf here) that he is "a huge fan" of PT and his worry is just that his patients will end up going to PTs who know nothing about TOS and will just make them worse. Such a valid concern, since many of us have experienced these types of PTs. He said if a patient has a PT they trust from before and that has knowledge of their patient's body and TOS, that is totally fine with him. But in the beginning, he just wants his patients to follow his exercises and nothing else because he prefers to control his patients' post op care as much as possible (amazing! Btw since most surgeons just are horrible at this!).

Ok, I think I covered everything 4 weeks and counting til the big day!

I missed one thing. I spoke to him about my pec minor tenetomy. He said it should not be done on all patients with TOS and definitely not at the same time as a TOS surgery. He said that he has performed them too but only if the patient still has pec minor syndrome AFTER a thoracic outlet decompression, but usually a thoracic outlet decompression resolves pec minor issues...just one more fact I wish I knew before consenting to the tenetomy

wow wow wow-good news all in all. well at least you must feel relieved. !

Thanks and yes I definitely feel relieved, but also scared the closer the date approaches. Good thing is though, since going through this once already (but obviously not as bad in reference to the surgery itself), I know what NOT to do, which is so so important post-op.

I feel odd, but I am much more freaked out by my upcoming second surgery than the first one the closer it gets. I know I am in the best hands with Dr. D, but I guess since things did not go well the last time I am not as optimistic as I wish I was, I am really trying.

Does anyone who has had surgery with Dr. D and experience with Mass General, have any pointers, things to know beforehand? I just found out I am going to be in a shared room and my mother can't stay with me overnight and now both of us are pretty upset about that, because she was there the entire 5 days last time

Exactly why there are less than none statistics kept with surgeons

parbie, parbie parbie
ur journey... sharing, journalling and facts good, bad or indifferent on this thread is outstanding for others. You dont know how much patient's appreciate this openness when it comes to the reality and doctor/surgeon hit n miss, protocol and patient doctor respect. NeuroTalk patient's helped steer me many years ago to the knowledgeable docs which I am forever grateful.

Took me several hrs to just read your and everyone's responses to your story while caring for my sweet sheltie who had a stroke on her 15th birthday last night. It's the most I can do since she has got me thru it all.

I bow to you for your tenacity, your openness while helping others in their own journey. Wishing you the very best with Dr D. Understand he is phenomenal as you and the other TOSer stated. Now lets begin the healing come this week for you. You have many friends here, so keep us updated. And if you need a personal voice to bounce off of my phone is on 24/7.

Thx everyone for sharing in this awesome thread
And thx to parbie for detailing her journey for all of us and future patient's to learn from

CALL ME 24/7 if you need a TOS shoulder to share. So proud of your tenacity

Thank you Ocelyn, it's really good to know my thread can help others. I myself wouldn't know what to do without reading others' stories and turning to our fellow TOSers for advice or support because for me, there is NO ONE ELSE in this world who can understand me better.

I will definitely keep everyone updated this coming week...3 more days!!!