Hello,

I've have had TOS for 2 years. I have bilateral C7 cervical ribs and now carpal tunnel as well. Pain and limitations are a part of my life everyday now.

I live in Northern Canada and don't have any TOS specialist here - I travel 8 hours to see Dr Sean McFadden (thorasic surgeon) in Calgary. Great doctor, he has helped so much. I was lucky to have a family doc that new about TOS and referred me right away to the doc in Calgary.

I will be going for a right side cervical rib resection in the beginning of Dec or Jan 08. I'm very nervous about the surgery and pain. I'm also nervous about the outcome - if this doesn't work, I don't know how I can live with the pain I have now for the rest of my life...it's affecting my family, my job, my friends and my happiness. I'm sure you all understand - I wish sometimes those around would understand too.

I've had many surgeries (non TOS related) in the past. I've dealt with the pain and live with pain on a daily basis. I'm just not sure how the pain and recovery from the rib resection compares to those?

How long is the recovery?
What can I do to help recovery quicker and with a good outcome?
What positions help ease the pain? I'll be a passenger in an 8 hours car ride home after I'm out of the hospital (sitting on a plane or car is painful now..scared about what it will be like after the surgery!)
What about reducing the scar (dr will be not going through the arm pit - neck area instead)?
Does it matter if you're in a flare-up when you're going in for surgery?
Any other things that others have done to help the recovery or surgery go smoother?

I'd appreciate any help or advice you have - it's difficult to find anybody in my home town that understands what it's like to live with TOS and how much I want to be "normal" again ( I miss my previous life!!)

I'm really glad I found this group - I already feel better just reading the many threads...there are others going through the same thing - i'm not alone!

Toby

Hi wow another Canadian cool any ways i don't know if you have read any of my posts i am mucker and i have just had surgery on my right side. I also have bilateral tos and carpel tunnel. I had carpel tunnel releases back in 05 but the right side did not work so then when i was diagnosed with tos in Aug 05 the surgeon wonted to wait and see what would happen with the tos surgery before he deiced if he would do my hand again. Any ways my post is (my surgery story) check it out there might be some answers there for you and if not pm me and ask what ever you wont i will be more then happy to tell you every thing i know about it. And if you would prefer i could call i have a long distance package it only cost me .25 cents any where in Canada any time of day and i can talk as long as i wont for a quarter any way good luck and if you wont to talk just pm me bye for now.

Hi Toby & Welcome,

You brought up an interesting topic about flares at time of surgery.

It got me to wondering if when you are "put under", if the spasms release or if they continue while you are "out"??

We have some nurses with TOS here and maybe they will know about that.
You might talk with you surgeon about the car ride issue, just to make sure they don't release you too soon for that long of trip.
make sure driver/car is very smooth and careful - not hard turns, braking or jerking.

things that have been mentioned before for after surgery over time here-

some helpers
some easy meals prepared ahead of time, frozen meals, soups,
light or disposable plates, cups, straws, etc -{no dish washing or fear of breaking things}
many pillows for comfort
a nice recliner as you might feel like sleeping semi reclined for a week or so
CDs or DVDs to watch/listen too while you are healing

shelley - just last week {or 2} mentioned a scar reducer

I can't recall the name though, shel??

I'll bump the scar thing thread

Mooshy pillows can be your best frined in the car...

http://www.mooshpillow.com/productsCA.html

http://www.target.com/gp/search/602-...obead%20pillow

I'd have several for that ride home- one for each arm adn one for neck, maybe another big bed pillow between you adn the door, and make sure you have ADEQUATE PAIN MEDS!!!!! Don't go rushing out of that hospital or anything, OK?

Otherwise, my recovery was sort of 1 week of total misery and non function, 1 week of able to get myself around but that was about it, at two weeks i was driving again and getting around pretty well, but had to be really careful still.

4-6 weeks i was feeling pretty good, really, at least as well as i did before surgery.

For most, recovery has a lot to do with how bad you are going in, that's why i use the analogy of 'at least as well as i felt before surgery' as my 4-6 week benchmark.

I had left side rib resection in may and right side in august. I am still off work because i have had a hard time getting it back together, but I also have good disability insurance, and i am trying to get myself to a point where going back to work is not going to hurt me. i am not sure that day will come...adn i am currently thinking about new occupations all the while doing religious PT and cardio trying to get some core strength back adn getting through my day at home without causing myself extra pain. My two little kids adn one teenager don't really help in this matter, i have a really hard time not working to whatever limited abilities i have, which means sometimes i overdo and pay.

anyhow, i guess what i mean is surgery isn't half as bad as having tos....it is just another bump in the road that will knowck you out for a few weeks.

best of luck and good wishes to you,

Johanna

Toby,

A few things that might help:

TOS due to cervical ribs has a better surgical success rate than TOS due to trauma or RSI.

From my experience and that of others I have spoken to (or read of), typically when you wake up from surgery you will be ablle to notice a difference already. My arm and hand were warm, much of the constant ache in the upper arm and shoulder were gone. It was really amazing to me!

Once the anesthesia leaves your system and you're a few days out from surgery, you may feel like a Mack truck ran you down. It's not the easiest surgery as far as recovery goes, it's pretty invasive after all, and they have to push and pull things out of the way to cut the rib, avoid cutting anything they shouldn't and do it all through a fairly small incision. The rib cage, muscles, nerves, fascia, and everything else disturbed throws a fit for a while.

The BRIGHT side is this is ACUTE pain - keeping that in mind made it much easier for me to bear it. I knew THIS pain would go away. I could see PROGRESS from week to week. By a month after surgery I felt fairly human again.

My best advice is don't rush your recovery. Listen to your body, and get plenty of rest as that's when your body heals most efficiently. And be sure to ask your Dr about appropriate physical therapy and work restrictions.

best of luck,

beth

Thanks for all your advice!

I'm so happy to find others that are going through the same and living with TOS. My friends and family have been supportive (especially my husband) but they don't really understand what it's like to live with it everyday - how could they? I'm still trying to figure it out...LOL

I'm going to look for a mooshy pillow - actually a few of them. It will be a long ride - but more comfy than a plane ride with a 3 hour layover in an airport...

I'm also trying to get a helper to come and stay with us for a couple of weeks when I'm back home. If not, my husband will stay home with me..again .

I'm excited to have TOS in only 1 arm instead of 2 - but still nervous about if it doesn't work (good chance with the "riblets" gone I've been told)

I was nervous about the pain after the surgery but I'm feeling better about it now - like Beth wrote..the recovery pain will end at some point. That will help me get through it - with the TOS pain it wears you down after so long, keeps going and going and going. The big difference will that other people will "see" and expect that I'm in pain following the surgery vs. looking completely normal and suffering each day.

I'll not rush my discharge from the hospital (my husband will make sure - he'll be with me and doing the driving). I'll also make sure I have enough pain meds to get home comfortably - really important!!

Thanks again for your help!!