Surgery on Monday
 

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.

social security
 

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.

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

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.
:hug:

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

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

Best wishes
 

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

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, :hug:
beth

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

Good Luck

Dolfinz:hug:

Yes
 

Just wanted to wish you luck on Monday. :hug:

Good Luck
 

Bevery,
Wishing you the Very Best Luck on Monday.. I'll pray for a successful outcome and pain free days ahead...:Good-Luck:

Many Hugs :hug:
Dawn

A wedge pillow or recliner for sleeping...(actually, docs can prescribe these for you so medical insurance can cover them...dr J just did this for me yesterday)

those mosshy pillows with the beads in them are great, i needed one in the hospital to rest my neck on b/c it felt very unstable after my scalene muscles cut. took a good 2 weeks before i comfortable sitting w/o one.

and yes, don't let them send you home without enough pain meds!!!!!

Hi Beverly
 

Haven't had TOS surgery but I know I too will be nervous if/when I do. Just want to wish you the very best of luck Monday. We'll all be thinking of you. Please keep us posted.

Hugs,
Stardust

thinking of you
 

Be calm today Beverly, you are in the home stretch and I hope it's going to be a breeze for you. We will be here for you on the other side - can't wait to hear a play-by-play from you (when you are feeling up to it - no typing so soon).

Will keep you in my prayers, :)
Anne

Home from Surgery
 

Hello everyone,

I had TOS surgery on Monday 6/18 I came home on Friday. I can't say that this is an easy surgery and I am still in alot of pain but feel that it is mostly surgical pain surgeon told family there was alot of compression and impingement said he removed ribs, muscle and other fibrous band I haven't talked to surgeon well I have talked to him in hospital but he was talking to morphine woman and she doesn't remember anything ha ha. Anyway I have high hope for improvement and more quality of life . It seems I can already tell a difference in the pain between shoulders and more circulation in arm. I think I had a really good cardio-vascular surgeon who is very expierienced in TOS. I thank all of your for your support and I Thank God for directing my treatment. I hope that all I have been through will help me to help others I feel that God really wants to use me to bring hope to those like me who feel they have walked through the valley of the shadow of death. Anyway I give an update next week but so far so good just working through the pain.

Home from Surgery
 

Hello everyone,

I had TOS surgery on Monday 6/18 I came home on Friday. I can't say that this is an easy surgery and I am still in alot of pain but feel that it is mostly surgical pain surgeon told family there was alot of compression and impingement said he removed ribs, muscle and other fibrous band I haven't talked to surgeon well I have talked to him in hospital but he was talking to morphine woman and she doesn't remember anything ha ha. Anyway I have high hope for improvement and more quality of life . It seems I can already tell a difference in the pain between shoulders and more circulation in arm. I think I had a really good cardio-vascular surgeon who is very expierienced in TOS. I thank all of your for your support and I Thank God for directing my treatment. I hope that all I have been through will help me to help others I feel that God really wants to use me to bring hope to those like me who feel they have walked through the valley of the shadow of death. Anyway I give an update next week but so far so good just working through the pain.
Thanks to All!
Beverley

Welcome Back, Beverley!
 

so good to hear from you, and i'm glad you made it through OK. you are so right when you say there is nothing easy about TOS surgery. this is a very hard recovery... and can be a tricky one, so steady wins the race, my friend (we TOS'ers don't like to hear that).

coldpacks are going to become your best friends right now; be sure you stock up on several (frozen peas work great, too) so that you always have some to alternate between the surgical site, the neck/shoulder/upper arm/forearm/hand, etc. - wherever you need it. you'll develop a rhythm. i had 4-6 going at all times, for weeks after my rib resection as i recall...

also, many find that sleeping in a recliner is a lifesaver after TOS surgery. you might be able to get your doc to write an rx for one and get it covered by your medical insurance, or even just as a rental from a medical supplies place. there was a recliner on a recent thread here, i think from relax the back, that made me drool, beverley, but it costs more than a car. so i don't see how that purchase is one in my immediate future... but a gal can dream!!:cool:

the fact that you're feeling improved pain levels, even only slightly, better circulation in the arm, increased ROM, etc., are all very good signs, i think. very good, indeed. i know what it's like to have suffered in great pain in a long, long time and be shuffled from doc to doc, dx to dx, beverley. each one thinks their analysis of your presenting sx is the correct one and promises you the moon, don't they.

but you are right to have high hopes for an improved future and a better quality of life. you deserve to feel better. and your story should be so much more than a cautionary tale. your spirit of wanting to reach out and help others who are still suffering i think is just great. and you have so much to offer in that regard.

but it is time to take care of you right now, beverley. like dawn said, please take it very easy. you are really quite fragile after a major surgery such as this one and it's a huge insult to your neurovascular system, so things might be screaming at you that weren't before. don't be alarmed at that, just heed the call and reach for the icepacks. and the drugs...:D

if there is someone there who can post for you, that would be ideal. give your arms, hands and fingers all the rest that you can.


again, so good to see you!

alison

Beverly, Good Luck!
 

I wish you a calm peaceful night.
I was so ready for surgery and had no idea of what to expect, the forum and peeps here with ALL their knowledge.
Make sure you have family and friends around for a couple of weeks to do EVERYTHING for you.
DO NOT be afraid to ask and take pain medication.
Get up and move so your circulation flows after a couple of days.
Rest, use ice for pain and swelling,
DO NOT lift anything more than 5-10 lbs for 6 weeks or more.
A gallon of milk weighs 10lbs, no pulling clothes out of the washer into the dryer, no picking up kids or animals.
Have people drive for you.
And do EVERYTHING in slow motion, no quickness as if someone had dropped something and you automatically reach for it.Us epillows for comfort.
The tempurpedic pillow at Bed Bath & Beyond has bee a blessing
Lay flat when sleeping and DO NOT watch TV in bed... neck strain.
Enough?
I can account for more dos and don't but its all common sense.
XXOO

Welcome back Beverly! Thanks for checking in with us, so glad to hear you have circulation improvement so soon!! Wonderful news! Do rest and heal. Use whatever feels good: ice, heat or a combination! Take your meds on schedule and drink lots of fluids/water.

:hug:
Anne