why is that? please.

LIFETIME of therapy from
-Physical
-Aqua
-Hypnotherapy
-Acupuncture
-Chinese medicine
-Massage therapy

Do it all and often

I was directed by a vascular surgeon to do "everything under the sun" to avoid surgery. I took those words to heart.

By happenstance, I ended up on the doorstep of a pain management doctor who was familiar with TOS, Edgelow Protocol, etc. He had written his fair share of narcotic prescriptions for rib resections over the years and told me to never let anyone perform surgery on me. He felt science wasn't there yet to treat "TOS", especially with nerve involvement.

I see a combination of a lot of people, but mostly myofascial release, osteopath and doing parts of Edgelow at home. Cardio is very helpful to me as well.

I spent a few years on a TOS forum where I'd see people come and go have surgery. It didn't make sense to me as they'd usually come back . There seemed to be more of an involvement than just the thoracic outlet. Surgeons don't usually address dysfunction in the entire body.

I've reduced medication, and have increased function. I've learned to control it, but a lot of times I get excited about doing things and I go a little crazy. Luckily, I can recover from the fallout rather quickly, 24 hours.

I think whether you have surgery or not, you still have to do PT for the rest of your life. I like my parts and pieces, so this is the hand that was dealt to me and I'm it it for life--hopefully, as years go by, I can taper more meds, decrease therapy and increase function .

Heybro,

After 40 sum years, I am 66 y.o., I am having surgery with Dr. Donahue on 5/21 at MGH. I am having my pre-op tomorrow after a 45 min appt with him. He has not promised me the moon. He's not sure after all these years what he will find. I have done everything in my power and that I can afford on disability to help myself with the tos. My kids were panicky about the op. I calmed them down and told them how I feel. What if I can, swim, ride a bike, play a guitar. What if I can reach up and out and hold a new born baby. I want to have the chance to see if this op. works for me to have some kind of a life excluding sitting around watching tv and looking at the four walls. I want to be able to tell my friends I can go, dancing with them or sit on a blanke at a picnic and listen to a concert. I don't know, I don't have many years left, however if I could enjoy them doing things I have not done in 40 years I'll take it. Even it it's only a couple of things. I know you use Dr. D too. I did not have luck with the botox etc. My muscle was so tight while trying to inject them they almost didn't get the needle in. I hope I will be able to tell you that things worked out well for me and even tho we are all different it may give you something to think about. I have to go now, pc pain. I'm glad you came out and spoke about your concerns about ever lasting pt or not.

Irisheyesmilin

For me its been going on 2 years. i am abut 60% better-I have several days in a row with no pain. I do get flare-ups though if I do the wrong thing-usually overstreching or massage, pt. I do some kind of therapy at least once a week. I am able to go to the gym-Zumba, easy pilates, feldenkries. I am going to try easy yoga. Lots of walking. Have stopped streching too much but still get on the soft roll. I took a melt method class and will be using the roll more often. going to look into easy strengthening.

I think I will always have to do some kind of therapy -but am not considering surgery for some of the same reasons Anne said. I think if you think of surgery as a cure all, that is a mistake, but if you are in constant pain and is not getting any better then it may be the right choice for you-

I havent tried to go back to full time work yet although I have been thinking of it- What does Dr. Donohue say? Did the botox help?

Dr. Donahue said he has never had to go back in, so to speak, never had to reoperate to take out scar tissue or anything else.

I don't understand this disconnect between the theory that surgery is a nightmare and avoid it and surgery as an option that won't actually make you worse, and could actually make you better.


???

Is it just that Dr. D is great at it?

He *is* one of the few that does not jump to surgery in the first five minutes....and actually picks and chooses who he thinks are best candidates.

From reading TOS forums since 04, I've come to the conclusion that the surgery decision has to be what fits best for that one person.

Everyone has their own personal level of what they want to try, or if they don't want to wait the longer time for therapy & self care to work or not.

And there are the Pubmed articles/studies that state surgery does help for approximately 80% or so, and improves for 45%, no change for some and worsens for a small %. ( % are my best recollection - the articles are in the useful sticky thread somewhere)..


I will nearly always suggest trying expert PT and therapies first, unless someone has specific symptoms that need action right away.

[QUOTE=Jo*mar;983227]And there are the Pubmed articles/studies that state surgery does help for approximately 80% or so, and improves for 45%, no change for some and worsens for a small %. ( % are my best recollection - the articles are in the useful sticky thread somewhere)..
/QUOTE]

what is the difference between "helps" and "improves" ?

i am not advocating for one or the other. i am just playing devil's advocate to both sides to try to figure out things for myself.

I think for me the reason why I decided to do surgery rather than continue to explore other options was two-fold...1) my age and 2) my condition downfall. I'm 26 yo, and I was at a place where I could afford to take the time off work and my body could heal as long as it needed. I don't have kids or anything else to take care of. Secondly, it got to the point where I couldn't do my hair, makeup, yoga, run, carry groceries, shake hands, write easily, etc etc. My condition was dramatically going downhill and I worried that if I didn't act, things would only get worse.

Looking back, I'm really grateful that I had surgery and would do it again no question. Dr. D did have to go back in at 1 am the night of my second surgery due to internal bleeding in my chest, but he said he's only had to do something like that for one other patient in his career. He has only had two patients that have had no improvement from surgery, everyone else has experienced at least minimal positive gains.

I can't say enough good things about him. I will continue to sing his praises, as he has given me so much hope for my future when things looked really bleak when I started this journey over two years ago.

[QUOTE=heybro;983230]Oh sorry, I can't recall the wording the article used but basically 80% were helped as in "fixed", I can't recall the time frame of the surveys. maybe 6 mo, 12 mo & year or 2 post op??

Ok found the post w/ article -
http://neurotalk.psychcentral.com/post959769-10.html

related Pubmed article -
http://www.ncbi.nlm.nih.gov/pubmed/17985565