I tend to think that the scar tissue was not removed properly to begin with. There's no way that so much scar tissue could've built up in such a short period of time.

Limoges, mine caused issues after five months. My tumour was the size of an orange, so theres a lot of dissecting and playing around with things while they are in there!

Please read what I actually wrote. No one's disputing that scar tissue causes problems, or that it should be removed because it causes pain, or that we're all different.
What I said was that my surgeon told me that too much movement post surgery will not cause scar tissue to regrow more quickly. I'm going by what my surgeon--who has a very high success rate with this surgery--has told me. I should not hesitate to move around and live life for fear of scar tissue ruining the results of my surgery. That's what I said.

Blurto, I don't believe that was a sweeping generalization, honestly. I do find that telling people to restrict their movements post surgery for fear of scar tissue forming is misinformation. Certainly I'm as entitled to my opinion as they are.

I have scar tissue trapping my subclavian artery and vein, causing complete blockage of both (confirmed by MRA, and about a gazillion other tests). This scar tissue formed after surgery for a broken collar bone that did not heal. It formed to where my arm and hand was going off-color within 4 months of surgery. I make keloids, inside and out. Have not found anyone or any way of preventing or fixing this. It's two years later, and apparently scar tissue is STILL forming in there.

This scar tissue was seen, confirmed, by Dr. Donahue's specially-designed CT scan. Unfortunately, I cannot tell you what he would do about it, because he mixed someone else's neck MRI in with all of my scans, and based "my" diagnosis on the bulging cervical disc that this other person had, but I don't. (Which would explain why he kept asking me about "my pain" when I kept trying to tell him I really didn't have much, it was the blue arm and the cardiovascular side effects that were the problems.) I found this out when I got my hands on a copy of his report about me, while waiting 4 months for his office to appeal the insurance refusal for the botox injections he seems to do on everyone as part of his investigation. (His office was not appealing for those four months. They had not done anything but make me think they were appealing.) When I finally got through to him to tell him of his mistake, he refused to take responsibility for his mistake and dumped me as a patient. So much for the shining Dr. Donahue. He will always be held in a special place with me, and it ain't in my heart. And it wasn't the mistake, it was the way he handled it that has placed him there.

So on to yet another doctor, New York City, again. Who said messing with scar tissue is a VERY BAD IDEA, as someone else in this thread said, it is tougher than regular tissue, so if you start pulling on it, guess which rips first (hint, not the scar tissue). And, also, there is no way to prevent more scar tissue from forming as a result of the surgical cutting. Which is also what a doc at Yale-New Haven, and a doc at Columbia Presbyterian had said when, they both eager to remove rib & all, I asked, well how do you keep more scar tissue from returning? and all they could say was "good question". But no answer. Because there isn't one. Other than to stay away from patients like me that will scar excessively, and ruin your record.

In searching for a possible solution to stop the ongoing internal scarring, I have run across many articles on scarring after TOS surgery that causes further problems and need for further surgery. I have also run across many articles talking about how surgery to repair scarring just causes more scarring, then more surgery, then more scarring.....

I'd also add the caution to be careful of any surgeon who say THEY never have a certain problem, and that it won't happen, unless they have specific, concrete, documented techniques for preventing it. And yes, be careful of anyone too eager to do surgery, but also be careful of those who seem too good to be true.

You seem to be using this forum as a way to discredit a doctor, winc. I can say without hesitation that my experience--and those of most other patients who have had Dr. Donahue perform surgery that I've spoken with on this board--has been completely contrary to yours. He and his team could not have been more professional and caring, dare I say, outstanding. Seriously, every single person I encountered on his team. I'm sorry you had such a bad experience, and I don't doubt that you did, but it's hard to believe we're talking about the same person. I guess like most things in life, we all experience them differently.

I get the feeling that no one has actually read what I wrote, as evidenced by some of the responses here. I think I'm going to bow out of this discussion for now.

I read and re read many times to be clear on what I was replying about before I replied.....I thought the misunderstanding of the topic was corrected.



Just sitting still in a chair would probably give you many more problems - a possibility of frozen shoulder, as well as gunk & toxins building up from lack of movement...

Limoges,
I'm cringing reading your posts. They are a little insensitive and inflammatory --- I think they are causing scar tissue build up as I read them.

I sincerely appreciate you taking the time to share your TOS experience and hope you will continue to do so over the next several years ---- long term results are what it's all about. I also enjoy how you share what Dr. Donahue tells you. It's helpful for all of us to hear what TOS docs think.

There is no misinformation here. What works for someone else may not work for me. Also, If someone says Dr. Donahue was a jerk and backs it up with specifics, then it is possible that he was a jerk and is capable of being a jerk. To say that he may have experienced it differently may suggest that Dr. Donahue was not a jerk, but the patient just experienced it that way.
Please consider what we are trying to tell you and don't get defensive --- we're just trying to help.

There used to be another TOS website and I read a number of people say that surgery was a great success until 2-3 years out ---- then symptoms started coming back from the scar tissue that built up.

I pray that this doesn't happen to you and that you live the rest of your life pain free.

A doctor mixing up patient records is a SERIOUS mistake.
A doctor making a wrong diagnosis and treatment plan based on mixed up records is a SERIOUS mistake.
If he had truly listened and evaluated me as carefully as he has a reputation for, and as it seemed, he would have caught his mistake while I was there for the initial examination. If he had looked at all the records he was sent before I got there, he would have caught his mistake (it included a printed, numbered, cross-referenced list of scans. This other scan was not on the list, not by type, body part, or date. I know. I sent him the list and ALL the discs and reports myself, directly.)

His office people at MGH itself were very nice. The one at his outside office who handles insurance and appeals, not so much. AND, she wasn't doing her job in my case. Totally blew it. Tried to lie to me about it (blaming the delay on the insurance company, when after the initial request for approval, she had done nothing further for months, until I spent a couple hours on a couple phone calls transferring department to department trying to find ANY evidence of anything she'd sent in), and in doing so closing ANY opportunity for getting the insurance to allow the treatment, by him, for all eternity, according to their rules. (You appeal within time limits, or forever hold your peace. The same doctor can never apply for that treatment again. So if it had been the right thing to do, I could not have had him do it. Irrational, but that's their system.)

If I hadn't been blinded by the reputation (people here write about him like he is a god) and nice demeanor, I might have questioned his emphasis on hearing about "my pain" so much, when I kept saying pain was not really the problem. And we would have caught his mistake. And, between waiting to get in to see him, waiting 4 months until the mess unravelled, and waiting another month to get to a new doctor, I would have saved six months of my life lost to this.

Am I the first and only person he or his staff has ever made such a mistake on? Hopefully, but probably not. If I had seen anyone else saying, hey, be careful if something doesn't sound right, hey, check up on K in the office, don't trust that she actually is doing what she should, at the very least I wouldn't have lost 6 months of my life, of my kids' lives, to pinning hopes on him. At best, we would have caught his mistake while I was there, and I would have had proper evaluation and maybe proper treatment.

So, yes, I want people to know they should be cautious of the golden glow of his reputation. Or anyone else's. And ANY doctor who claims to NEVER have a problem that it is documented others do, without solid, documented reasons why and how he prevents it, well, he's fooling himself and you. There is a difference between "I have not had that problem" and "I never have that problem". Red Flags all over the place. And that comment is not applied to Dr. D, but to any and all, and again from experiences. You don't want a Dr. Denial on your case.