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!