has anyone decided not to have surgery when it was recommended?
 

I am wondering if anyone has made the decision not to have surgery. I have TOS and no pain. I had numbness and coldness in two fingers, but I began physical therapy in May and my fingers are much better. I am seeing the physical therapist twice a week. I don't have any pain (and never did).

I don't want to have the surgery because I am functioning fine. In addition I am concerned about complications post surgery because I always seem to develop infections, have lung complications etc. So I would like to know whether anyone here made the decision not to have the surgery after a surgeon recommended it. Thanks!

if you can get away without surgery i would def go that route unless you have a long c7/cervical rib

how were you dx'd

how diagnosed
 

I had a lot of tests. a functional ultrasound where they measured the blood flow to my fingers while moving my hands in different positions, ct scan with contrast, emg, mri of the cervical spine. All four of the surgeons whom I saw concur that I do have it. I just want to understand better what the risks are of doing nothing about it other than PT.

I had surgery and am much worse for it. If I were you, without pain and functioning fine, I wouldn't go anywhere near surgery.

The surgery is significant and in a very region involving complicated structures. The potential downside is big and there is no real upside for you if you're doing fine now.

Good luck,
Kelly

I would definitely go by how you feel and how your symptoms are , if you are functioning well enough and PT is helping stick with it.

I think quite a few people get by with TOS, my pulse still cuts off in certain positions but I can handle that & adjust to it, and haven't had any clots or vascular problems at all.

If you don't have a lot of swelling, clots, or pain issues why have surgery....:rolleyes:

Sometimes surgeons just like to do surgery....and make $$$:(

if you have no pain and your life is not threatened dont have surgery at least not yet. I have alot of pain and my dr. said i might elect to have surgery if I want to go back to my regular work. The surgeons werent as sure and after seeing them I decided not to for now. I have been doing pt for almost a year,but only a good one for the last 4 months and I have been improving alot but not enough to go back to my regular work.I amy consider it again in the future,because sometimes the pain is too much to bear.I only have ntos though.

the first two specialists I saw, at very big name east coast places, immediately said do surgery to remove rib (like in minutes from getting my images, which were a single mra and a single x-ray). First one wouldn't even address the issue of scar tissue, tho that was also clearly involved, second one said they'd clean it all out, as well as have a collarbone specialist rebuild my collarbone which had been broken and repaired already (why? they just do).

Third one, at another big name place, mixed someone else's records in with mine, and so botched diagnosis, so I'll never know what he finally would have come up with, tho he finally got incontrovertible images of the scar tissue that was actually causing the vtos problems.

Fourth one, back in NYC, did some further imaging, said the problem was solely caused by excessive scar tissue, bones & spacing were fine. Said even tho he was a surgeon, he would NOT, NO, NOT recommend surgery because messing with scar tissue is more likely to cause further damage, and in someone like me who is known to scar excessively, only cause more scarring and more problems.

Until something happens or progresses to where there is no choice but to do something, or someone can tell me how they address and prevent the scarring issues, no one is touching me. Chopping out healthy body parts is not something to be done hastily or taken lightly. And what I was reading at the time indicated that scarring after the tos surgery was one of the major reasons for it failing, and that even in people who have normal scarring responses, let alone someone like me.

so far physical therapy seems to be helping me. i will know in the next month she says for sure.

no doctor has ever told me to have surgery. most of them say it is up to me and so that doesn't help really. they say to do it if you want it.

one did tell me that he has a 100 percent success rate, which kinda scares me.

is anyone sorry that they DID have surgery?
 

the issue for me is that my symptoms are not interfering in any way. However, I don't want to not have surgery if that is the right thing to do. an eight week minimum recovery also seems like a very long time, and that is if there are no complications.

I really don't understand why a surgeon would recommend surgery if you're not in any pain and doing pretty well. That doesn't make much sense.

I had surgery on one side years ago and it didn't turn out well, so I've never had the other side done. Usually, a good surgeon will only recommend surgery as a last resort.

I think from past reading, many years ago, that some surgeons would suggest surgery thinking they could help (or to get in more practice:(,, ), but in reality they didn't have the expertise to do a good job.. Or another reason to suggest it would be to make money for the dr & hospital... sad to say , but it could be a reason also.


Usually surgery is best as a last resort, unless there is some clear & specific reason to do it when there is no pain and symptoms are tolerable.

I think it is being recommended because my artery is being compressed.

Does your hand swell or turn purple?

Is it only compressed if your arms are up? or in positions you don't often use, or can avoid using?

There are probably differing levels of compression too. Mild, moderate, severe - I would think severe would mean compressed constantly and that sx would be very constant and problematic, certainly surgery would be indicated for that level..

I'd say mine is quite mild, I can hold my arms up for over a minute before having to start alternating to let blood get flowing again. I don't have to hold them up very often at all. I can still paint ceilings with a roller extender since my arms are in motion so blood keeps flowing.

I don't know if this is true or not but logically it seems it could be , my chiro told me that vein compressions can be more serious and more risk of clotting than arterial.
Probably due to less direct pulse forces.

Jo Mar you are so right, if you don't have pain issues and you are improving with physical therapy , i would give it some time.
Also, sometimes we need more than one physical therapist to heal us and we need to keep researching, as in my journey I have learnt that many of us have musculature, postural and structural issues that the compression can be coming from and that it's the muscles that hold the ribs in place. Things can go into dysfunction because of that and surgery may not be the only answer! Theres a list of therapists on this forum that you can refer to if you need to.

Also, if you are still having coldness in your hand try abdominal breathing exercises at least for 20 minutes at a time and your hand should warm up. If you are already doing them thats great.

Or see if it's positional for you, does a change in position improve your symptoms, which means the compression can be mild and it doesn't warrant surgery atleast for now. I am an Atos patient and pain, swelling and coldness was definitely a big issue before surgery and I don't have any swelling or pain in my fingers now.
Hope that helps :) good luck!

no my hand does not swell or turn purple.

can you tell me more about abdominal breathing exercises? I am willing to try anything. I had numbness and coldness in my fingers but that is better now.Thx!

Also called diaphragmatic breathing.

this describes & shows it better than I can -
http://www.normalbreathing.com/learn...p#.UDu1RKCXfXo

Jo Mar has pretty much nailed the abdominal (Diaphragmatic) breathing with the link posted,

I learnt mine from Peter Edgelow but unfortunately he does not practice anymore due to health reasons, but he has trained a Steve at Physiotherapy Associates, Hayward CA, but I don't know what part of the country you live in?


In my journey I have realized
1. I need to do a 30 to 40 min cardio everyday
2. I need to do the diaphragmatic breathing exercises,
3. Soft tissue massage and myofascial release along with exercises taught by my local therapist to bring function back. She also uses a infra red laser light on the more painful areas, which I just love. ( I see her once or twice a week)
4. Currently I am seeing Arthur Ando (CFMT) in southern Ca for more structural issues and he is quite the expert on the body's stucture and posture and does manipulation to prepare the body for exercise as well has prescribed specific exercises,
But doing them all has really helped me and I am beginning to improve.
Earlier I could only do a limited range of Edgelow's breathing exercises, but now I am finally progressing because of the latter two.

Hope that helps!

I live in the northeast
 

Thanks for all of this help! I am starting to do more exercises now and hopefully that will loosen me up.

I am so glad to hear that Iris, and soon it should be all good. :) good luck!

Most of you are from CA or the west Coast where you have access to highly trained PT with specialized skills. I live in rural VA outside of DC and No. VA. There is no one with experience in my area. And I'm having difficulty finding anyone in the surrounding DC area. Does anyone have a recommendation for a skilled PT in VA or DC area? Postings lead me to believe that a skilled PT can make all the difference. Thanks!

I think if you go to the website for Institute of Physical Art which instituteofphysicalart.com and look in the right hand corner, look for a box that says " find an IPA clinic or a CFMT" ie. certified functional Manual therapist, it gives you a list by state. If you find one of these CFMT's, you should be in good hands.
My CFMT, Art Ando of Ando and Aston Physical wellness therapy is very highly specialized, I travel from northern california to southern california just to get evaluated, treated by them and learn the exercises, infact just came back right now from SO CAL today. It was so worth it. Give it a try. If you need to travel a little in your area I would still do it. They are amazing. Good luck!

thanks stos2
 

I have ordered the edgelow kit and told my PT about it yesterday. Hoping that will help more too, but I really think that I am doing a lot better.

I had bi-lateral rib resections, but it was necessary. I had two clots in my chest, which completely cut off blood flow in my vein in March. If I didn't have that risk I wouldn't have elected surgery. I'm still recovering from second (May 2) and seeing second opinion Dr Sep 17. Keep up the therapy! That's great. :)