[moneymaker8]

I will have TOS surgery on Monday and I am very nervous. Can anyone tell me if they have had successful outcome from surgery? I also filed for SS disability over 2 years ago and now wainting on hearing in front of judge. I would like to know if anyone has received SS disability for TOS. I have extra rib bilaterally dead pulse on both sides most of my pain left sided. I have been in chronic pain for years had many surgery including 3 level survical fusion now also had disc above fusion ruptured. can anyone give me hope.

[ocgirl]

Beverly,
There are many people on the board who have won their social security claim including myself.
I had more difficulty winning my long term disability claim (private ins co.) than I did with social security which was approved in less than 60 days.
The only thing social security questioned me about was if I was taking Zoloft and why I was taking it. I told them I was taking Zoloft for the situational depression I had because of the losses of tos such as career, physical abilities. My clinical psychologist had sent in a report along with the rest of my docs.
There is also a social security forum here that is good for questions and although the one I visited was on the braintalk forum, you can get information from neurotalk forum also.
Good luck.

[kellysf]

I had a bad outcome from surgery in Jan. 2005. I won my SSDI after two denials. The judge ruled from the bench in my favor.

I think the surgical outcomes are better when you have extra ribs. Just don't do anything during rehab that causes you pain. Best of luck.

Kelly

[tshadow]

I have a very severe case of TOS (as many here do.)

I am bedridden most of the time with high, high pain. I think often of suicide, but don't do it because of my children. But my quality of life is nil. (28 docs seen. I currently see regularly 2 docs, may include 2 more.)

I had surgery in my 4th (end of third) year of TOS. Rib removal, some scalene.

I got the relief of less, almost no headaches after constant, horrid headaches.

I got the relief of almost all hand color changes gone, as well as a general beneficial feeling that my circulation had improved and I no longer had a "brain swelling" feeling.

That was all, however. I still have horrific pain at least 5 days out of a week. I still am bedridden, have paralysis of legs, arms on regular intervals and I'm totally dependent upon my family and/or home aide.

I am not cured. I don't believe I will ever be cured or go back to any employment. I was an attorney - a very good trial attorney who had switched to a very (long hours) heavy computer attorney job during the last four years. I do have an admitted work comp claim.

Every TOS is slightly or greatly different. The outcomes are different.

You've got to keep fighting, trying new therapies and seeking a better quality of life. Why? Because I know there are people who love you. We owe them.

(Just my opinion.)

God bless you and keep you safe during this surgery and you know I'll be prayin' for you whether you want it or not! haha. Check back in with us as soon as you're able, but stay off the computer as I believe it caused my illness - perhaps someone could post for you? Try to heal as carefully as possible. Be selfish.

[Jomar]

Originally Posted by moneymaker8

I will have TOS surgery on Monday and I am very nervous. Can anyone tell me if they have had successful outcome from surgery? I also filed for SS disability over 2 years ago and now wainting on hearing in front of judge. I would like to know if anyone has received SS disability for TOS. I have extra rib bilaterally dead pulse on both sides most of my pain left sided. I have been in chronic pain for years had many surgery including 3 level survical fusion now also had disc above fusion ruptured. can anyone give me hope.

Surgical outcomes are pretty varied - depends on so much - surgeons skill, post op care and proper post op PT, possible scar tissue, patient follow up & compliance to use & limits during recovery, a few post op had gotten in car accidents during recovery and that isn't good at all.

basically though- the Pub med studies show that the majority of TOS surgery patients do well - some do not see very much improvement and a few have very poor outcomes.
If the extra cervie rib is the main problem compressing on the blood flow mainly- and you don't produce a lot of scar tissue in the months after - and surgeon is very good {experienced}...
If you feel very comfortable that you have found the best surgeon that you can - but if you aren't certain yet , don't be afraid to cancel, and rethink options.
I just don't want to see you have a surgery like this with a surgeon that is not fully skilled and qualified to do it.
******************

this is from a 2004 study of TOS surgery in France- it doesn't sort out those with extra C rib from the others.
Functional results were
excellent, 87 (49.4%)
good, 61 (34.6%)
fair, 14 (8%),
and poor in 14 (8%) procedures respectively.
http://neurotalk.psychcentral.com/sh...ad.php?t=17275


useful links thread - has our polls , articles, and many helpful links -
http://neurotalk.psychcentral.com/showthread.php?t=84

[dawn3063]

Hi Beverly,
I had my first TOS surgery January 2006 a partial scalenectomy and neuroplasty but I didn't have a rib removal. Eight months after my first surgery I had started experiencing numbness, tingling and pain in my right arm which was the surgical side. Due to problems with scar tissue I then had to have a re-do on Jan 2007 of the right brachial plexus. The anti scaring material that had been placed by the ulnar nerve didn't take and I had a large build up of scar tissue that was causing a sever compression on the ulnar nerve. My surgeon was highly skilled and well known.
Three days post op from my second surgery I developed sever burning and sensitivity to my right inner arm and elbow. Two and half months later I had been diagnosed with RSD. My surgery wasn't successful. I'm going to hold off on anymore surgery for a while but there may be one day that I find the answer to a successful TOS surgery.
It is a chance that you take when you have TOS surgery. There are many that it helps and many that it doesn't work so well for.
I wish you the best of luck and I do hope that you will benefit from the surgery. The best advice that I can give you is to follow your surgeon’s orders to a "T" Take is very easy, Do no lifting, no stretching, Just resting on the couch and letting everyone help you...
As far as SSD I just had my hearing today with the ALJ judge. I have an attorney representing me and it went very well. I have very strong medical evidence and a very well versed attorney plus I was lucky to have had a good judge. I will have my answer in 4 to 6 weeks but my attorney was happy with the hearing. So make sure you have a good attorney and strong medical evidence and it should help you along.
Best of luck with your surgery...
Many Hugs
Dawn

[hairdresser]

My thoughts and prayers are with you Monday, and everyday.

[DiMarie]

Best wishes for a speedy recovery and great health.
The best I can tell you is to keep up on all meds, don;t let pain get ahead of you. It is best to have a pump after surgery you can hit yourself...
Lots of ice, start range of motion with the OT in the hospital.

At home have frozen dinners, soup, bags of ice or many use peas....
I bought a used recliner for my daughter and a few pillows at K-mart for $3 small travel, and several $5 bed size.

Take it slow, no super hero, and don;t race back to work. Inflamed sick nerves don;t heal, they calm down..if they are inflamed and incitedthey create scar matter.

Tolerate the drain, it gets the excess fluid and surgical blood from the chest. It this was left in, it would turn to grayish matter attaching anywhere, making scar matter.

Baby steps and baby yourself.
Dianne

[beth]

I agree with everything Di said. The first week or two the post-surgical pain can be high for some - if this is so for you, then stick to your schedule for pain meds and don't worry about weaning off til the initial pain lessens - your body can't heal if it's stressed by high pain! And it's much easier to KEEP pain under control than to chase after it once it's raging out of control, capiche?

Also post-op, whenever you're sitting down, be sure to elevate your arm with those pillows, it takes the strain off the brachial plexus and will result in less pain. And when doing a lot of standing, you can do the same by sticking your thumb through a belt loop, your hand in a pocket, or using a sling or another device called an immobilizer which I was sent home with - you might ask about this. This is just a suggestion, and is only meant for the first weeks of recovery if you are in a situation where you will be standing quite a bit! It does help prevent pain, I can tell you from personal experience!

Most importantly, think positively, rest, and don't let yourself worry or get stressed out about anything. It is not a quick recovery from this type of surgery, typically, but slow and easy does it, ok?

Best wishes,
beth

[Dolfinz]

Just wanted to say hope things go well for you on Monday !!!

Good Luck

Dolfinz