A question for those who have had an operation for tos
 

I was wondering what kind of operation you had (muscle/rib) and how long the rebilitation lasted (when could you get back to work)? I'm asking this since I start feeling worsening in my symptoms and the angiosurgeon who diagnosed tos for me said that if my symptoms got worse I would need an operation but I for now I'm worried that it would take too much time untill I could be back to studies...

Hello,
What type of TOS compression do you have? Vascular? Neurological?
Do you have an extra cervical rib or other bony structure causing a clear problem?
What symptoms are you having and what level of pain or swelling?

Oh I just saw your other post that has more details :o,
here - http://neurotalk.psychcentral.com/thread62841.html

Most probably I've written all of my story there. :) The things which I'm worried about the most are the pain turning to my left hand and that makes writing very unpleasent for me and also the dizzy head which occured quite recently...

Are you able to get any good physical therapy & posture work ?
this link has lots of helpful saved info -
http://neurotalk.psychcentral.com/thread84.html

I had dizzy spells with my TOS at the worst of it.

chiropractic, very good PT and home care, posture work , stretches all helped me a lot.
My tos was caused by repetitive work & postures.

PLEASE DON'T LET THIS SCARE YOU OFF. EVERYONE IS DIFFERENT!


Memories of my surgery? I remember massive pain. We had to drive 1 1/2 hrs to hospital. Went to the mall and had fun so the kids would have great "last" memory just in case something happened. Went in early next day to hospital. This was in Towson, MD. Had one of the big TOS drs do the surgery (Dr. Keras). Came out of surgery on morophine pump. Pumped like crazy, let me tell you. Then I got sick to my stomach from the morophine. Went home next day. That drive was a killer. Took back roads because I didn't want to ride 695 (6-8 lane higway).

Laid in bed for a week or so. Watched dishes piling up, laundry piling up, that was frustrating. Enlist someone to help around the house if you can. I have 4 sisters and not one offered to help. No BMs for a week. Finally hobbled up and down the street to try to get them going.

Artery was 80% blocked. Nerves and muscles and artery were engulfed in big glob of scar tissue. They peeled everything out and removed the scar tissue. Also took out scalenes on same side. I sometimes reread the op report to remind myself that the surgery was necessary.

Previous to surgery, had multiple trigger point injections, botox injections, pt, pain meds. The surgery was a last resort. I had done everything else.

Don't really remember recovery time. It's pretty much a blur.

With all that scar tissue in there, the surgery has to have made some difference. It's been about five years now. I didn't have to go back to real work. Just had to get the house stuff caught up.

So, there it is. The whole honest story. Please don't let it scare you off.

hi

Everyone is different and I think a lot depends on how bad you are pre-op as to what the post-op experience is like.

I had my first rib removed nearly four months ago - by the time I had surgery I had severe vascular and neurogenic TOS plus was dizzy when I turned my head (it's because it narrows the thoracic outlet even more so reduces blood supply to the affected arm and head for some people) and was on a cocktail of painkillers.

I was very very sore immediately post-op and was in hospital for 5 days. I needed a lot of help for the first few weeks but was getting increasingly independent after about 4 weeks and wasn't really ready to go back to work till about three months.

I'm still on some painkillers especially as my nerve pain hasn't gone yet and having regular physiotherapy but I've been back at work for a month on reduced hours. For me, I feel like I'm on my way to getting my life back but my quality of life was so bad before the surgery that I'm obviously biased.

It is certainly not a minor op - and you will need lots of support especially initially - and as we all keep saying you need to trust your surgeon knows what they're doing before making the final decision.

If you search the forums with something like "post-operative recovery", some people in the past have listed exactly what they were able to do and when which might also help. I certainly found it useful when I was getting frustrated that I wasn't getting better faster than I thought I should.

Hope this helps

Jenny

thanks :)
 

Thank you very much. I really needed to know some real stories. :)

I totally agree with JennyH. I do belive your surgery recovery depends on what shape you are going into it. I had only been in bad shape for about a week and a half before my surgery (rib resection, removal of scar tissue and scalene muscle and a failed attempt at 'patching' the subclavian vein) so the recovery was pretty quick. I had to spend a week after surgery in the hospital to make sure the clot wasnt going to come back and they kept me pretty drudged up so its just a blur of a memory now. When I got home I took another week to just take it easy and heal and was back to work (in a limited capacity) two weeks after surgery. I would say it was at about a month that I started to feel good, at that time was able to start PT to regain strength too. And at two months after the surgery I was back to normal (or at least my new 'normal') which compaired to some others is really good.

recovery
 

I enjoy reading eveyones recovery. I'm very scared and have ups and downs about the surgery. My family doesn't seem to understand my pain or frustration since nothing looks broken on the outside. This is what is so hard. I'm having surgery on January 23, and I have been trying to prepare myself and family and I don't think they realize what they are in for. I have a high pain tolerance and have had other surgeries which were a breeze but I just know this will be different. I have been in severe pain with swelling so maybe I guess I will feel a little relief afterwards,IDK I guess wishful thinking.
Thanks! Marcy

one rib less
 

Hi,
I am an RN and was injured on the job lifting up a patient(pt) from a toilet. I was diagnosed a year and a half later after many false diagnoses. Eventually I was diag. with vascular and neurogenic tos on the right side.

I after a prolonged period of intense physiotherapy and constant massage therapy decided after many doctors telling me to go and live in pain there was nothing they could do for me to find a surgeon who may listen. Luckily one of the only doctors in Ontario who does the surgery was in my own town.

I had a couple of consults with him then I decided to have my 1st rib resected and a scalene removed to make more room for my nerves and vessels. I had 90% subclavian vein occlusion in arms overhead position.

After surgery I felt like a train had run me over. I had supraclavicular approach done. I had a chest tube after surgery and that hurt as well. I'd have to say although I hurt like hell the pain from the tos was gone.
I did have a long period of recovery. It was about four months before I was off all my medications and doing most things for myself again. I was lucky and was able to move back in with my folks again so they could help me with daily life stuff.....food, cleaning, laundry etc. I was unable esp for the first month to do a lot. I was quite sore. Bone pain was the main cause of the pain. I was however able to do gentle exercises in the shower when my muscles were in the warm heat.

I did gradual things around the house as my PT. I would unload the dishwasher and do laundry and was finally able to get to a point whre I was off all my meds and ready to go to PT full time.

I was an unfortunate case as I got WRECKED in PT they totally ruined my surgery. They had me lift weights and do things totally contraindicated in TOS recovery!!!!!! My advice is to be very careful in choosing your PT!!!!

I have NO regrets about the surgery and would do it agian in a heartbeat.
If only it could be done agian!

take care and hope this helps. have questions feel free to PM me!
take care,
love and hugs,
Victoria:hug:

I moved new member LSUsball2010 post and the replies to him to a new thread -
here-
http://neurotalk.psychcentral.com/thread68663.html