Ok....I am to the point where I am going to be booking surgery with Dr. Donahue in Boston.

What are pre-surgery questions to ask?

I want to know how I can keep the rib. What side he wants to do.

Summary:
I have had TOS for 9 years (only last year with diagnosis). So, for the most part, 8 years of doing nothing for it but avoiding computer and, year by year, more and more activities being avoided. I had to change my career as well (don't really like what I am doing now).

I did rib mobilization and myofacial release physical therapy for 6 months and then was told that we hit a wall. I did see minor improvement shortly after ending that therapy.

Botox with Dr. D did not do anything. Also am currently back in therapy seeing if the Botox helps advance us. Physical therapist can't really tell; either can I.

I am sick of going to therapy. I have been in therapy for a year (6 months of stuff that only made me worse, and then the 6 months of the stuff that made me slightly better).

I am not in pain. But, if I were to do activities (swim, use a computer for a job, or long at home, type up a story cause I like to write, or even just try on different jeans at a store!) then I get numb pinkies and if I keep it up, then I get the pain/pressure in my arms. I have never had neck/shoulder pain.

In other words, I am at a point in my life where I am fine as long as I don't do anything.

Dr. Donahue has never made anyone worse from surgery. There is real hope with him. I want to try it.

I have wasted 9 years of my life (mostly in my 20s decade) and I want the chance at living back. Or, at least being normal.

If he doesn't help me much, that is OK.

I want to try.

Thank You.
Mark

good luck, I hope it goes well for you

IMO, this is a decision only you can make. I know exactly how you feel. I had TOS 8 years before diagnosed. I also have bilateral. From what I can tell most people improve with surgery but not all. Younger people who are diagnosed early do the best. Older people who have carried it a long time and been misdiagnosed and had other surgeries due to misdiagnosis generally do not fair as well. I am in this camp. You sound like you are in the middle of these groups. You are still fairly young and have not had a bunch of other surgeries but you have carried it a long time. It sounds like you have the right mindset. From wht I have read on here you have the best doctor in the country. I wish I had gone to him. My doctor was very collaborative with me during the first three months when I was feeling so well and thought I had finally been released from this nightmare. Now that recurrence has set in he will not give me the time of day.

I wish you well. I can relate 100% to how you feel. Pray about it and maybe you will get a confident sense of direction.

had you had surgery with that doc?

I know I run the risk of being a Negative Nancy but I would think very carefully about surgery. I read your statement "I am not in pain" with great interest. I would give almost anything to be able to say that.

Having had the surgery and being worse for it (which obviously colors my thought process), I would say to you to count your blessings and move on. Yes, you mourn the things you can't do or can't do as much, but that is a natural process with aging anyway, you're just experiencing it sooner than most. Yes, it's a bummer -- a big bummer -- but your body gives you messages like numb pinkies if you are overdoing. If you can alter your activities and stop the pain, you are miles ahead of many of us.

I wish you the best whatever you decide and will be sending you positive thoughts.

Take care,
Kelly

I fully support your decision.

Failure of the scalene Botox tells me that the rib and possibly scar tissue are the problem. The fact that you develop pain with even basic activities is telling, as well as hitting a wall with PT. I think the longer one waits to have surgery, the more scarring develops.

Men and young women tend to do better with surgery. Donahue seems to have helped all of his surgical patients who post here, men and women.

Questions to ask: Expected length of the surgery? How many nights in the hospital? Pain management post surgery (pain pump, oral narcotics, something for sleep (Valium or Ativan)? Post surgical excercises, PT and follow up? How to mitigate scar tissue post surgery? Write down your questions so you don't forget anything.

Good luck my friend.

Thank You Kelly. I want as much info as possible and I want the best argument possible for not having surgery. If, even with the best argument for not having it, I still want to do it, then I can be more confident.

The problem is, I get worse every year and have to take more and more things out every year. Dr. D has never made anyone worse. It seems like a good bet to place.

Thank You again. I am thinking and feeling deeply about this.

I have bilateral true tos, with severe narrowing of subclavian artery, due to extra cerv. Ribs. I had surgery on Lt. the worse side, 14 mos. ago, at MGH w/Dr.Donahue. I had symptoms 8yrs. of neck, upper back, shoulder & arm pain. Pain & Numbness in Elbow, hand & last 2 fingers, along with severe cold sensation quite often. Any activity, walking, pool therapy, 1lb. Db's, driving, reading, comp. Use, sitting to long will make everything worse. Dr. D. Was definite about my dx. & Highly recommended surgery. This surgery was no joke, pain worse thanmy neck fushion. On morphine for at least 2 mos. But I had 2 ribs out, he said pain med. Won't. Even touch the pain. I had increased arm & shoulder pain for 1 mo. after surge. You have to do neck & arm ex. 3-4 dray for 1 yr. To
pervent scar tissue. No PT.
My advice to u is make sure u have TOS & not Ulnar Nerve comp.
I'm. Surprised Dr. D. Recommended surgery for u.
U can't. Take back surgery so do ur homework & make u get answers to all ur? ??
Dr. D. is excellent w/answering. ?? He will email u if he can't. Reach u.
Best of Luck!

no it is not ulna nerve stuff - i did glides and therapy for that and it only made it worse.

i know it is my ribs because my therapist will touch them and they hurt like **(($#*($#

What tests, scans, Mri's have you had? I had many therapists that were wrong w/ there dx

TOS Surgery is not something u just try, there can be serious complications, and it can make u permantly worse

U do have age on ur side, I'm 50 with other nerve injuries. My Lt sided symptoms are far from 100% normal and actually have gotten worse past mo., I feel like I had surgery on lt.side again.