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.

winic1, that would be so frustrating to go thru all of that and the time lost waiting. Sorry that happened to you.

I guess we have to remember that no Dr is perfect all the time, all of them will have a bad day once in awhile.

Something to remember for anyone consulting with any surgeon or Dr
- make sure everything is clear and be sure ask questions if something is not sounding right.

Did you have sucess with the Dr. in N.Y.? If so who and what were/ar your experiences with that Dr.?

Hi Kellysf,

I had an arterial TOS surgery in Feb 2010. My symptoms returned in about 10 months.
I am having similar issues as you. I started therapy with Peter Edgelow and he was of he opinion that scar tissue built up over time. An MRI of the brachial plexus was done with view of the thoracic inlet and no scar was seen.( at another facility) I live in the bay area and am curious if you went to Dr Scott Werden for your MRI as I am thinking of doing the same to see if they can locate the scar tissue post TOS surgery. I would really appreciate it if you could share any info about anything helping you right now.

Thanks so much.

Stos2









Stos2

Sorry to hear you're having similar problems. Yes, my MRI post surgery was done by Dr. Werden. I had MRIs from before surgery so it was easy to see the scar tissue resulted from the surgery.

My surgery was performed by Dr. G. James Avery in San Francisco.

Let me know if you have any specific questions.

Good luck,
Kelly

[QUOTE=stos2;869696]Hi Kellysf,

I had an arterial TOS surgery in Feb 2010. My symptoms returned in about 10 months.
I am having similar issues as you. I started therapy with Peter Edgelow and he was of he opinion that scar tissue built up over time. An MRI of the brachial plexus was done with view of the thoracic inlet and no scar was seen.( at another facility) I live in the bay area and am curious if you went to Dr Scott Werden for your MRI as I am thinking of doing the same to see if they can locate the scar tissue post TOS surgery. I would really appreciate it if you could share any info about anything helping you right now.

Thanks so much.

Stos2



Hi Stos, I was refferred to dr. Edgelow as doing a certain Osteopathic release method. Unfortunetely I m in S. Cal. Can you tell me your experiences with him. Did he help you? Does he still sell the Edgleow Protocal kit. Do you think it would be worth traveling to see him?
thanks,jkl

Stos2,

I realize I didn't address your question about whether anything was helping me now. Unfortunately, no. I'm in the pain management quandary that many of us seem to be in. Dr. Werden found the scar tissue forming on my brachial plexus but surgery was never suggested, nor would I have considered it to try to remove the scar tissue.

I didn't have any luck with Edgelow, other than the abdominal breathing part. The rest of it always flared my pain and headache.

Good luck,
Kelly

I'm not aware of Edgelow doing any Osteopathic manipulations. I would not travel to him, but find an advance PT and/or Osteopath in your area.

He claims deep diaphragmatic breathing, which you move up into the Brachial Plexus, has helped patients break down scar tissue and adhesions. This has not been true for me, but I still continue to do a very small piece of his protocol daily.