i was diagnosed with tos in may 2005 from a work injury. my surgeon says i have the worst kind - neuropathic. i have been on tramadol, the max dosage per day, for almost 6 years now. i have been on methadone for a year, and now dilaudid. i work full time as an insurance adjuster, so i am at a desk and computer for 8 hours a day. i am finally having surgery in 2 weeks, for the 1st rib resection on my left side. my surgeon wants to wait and see if we need to do my right side also, but i know we will have to.
i'm scared. i'm on such high meds my surgeon won't prescribe me meds for after care. i have to have a pain pharmasist. he said we are going to have a hard time getting your pain under control. i'm scared after the after care and what to expect. will i be able to use my left arm? how long is the recovery period. surgeon says i'll be back to work in four weeks. is this true?
i'm starting to take out my fear and frustration on my loving boyfriend. my ex-husband couldnt handle this at all...he actually said no one else will love you with all your medical problems. that's another story. i don't want this to affect my relationship. i love him so much and he doesnt derserve to be the target of my frustration. it's like i can't let the little things go. and i'm MAD! i'm not like this. this is not me. i know it's the anxiety from the upcoming surgery. i don't care about any scars, i just want my life back. i want to have a baby. i want to be a good (future) step mom. i want to hold my babies. i want to garden, and walk my dog, and i want to work out! i can't even do yoga anymore. sometimes it just feels like there isnt a point to it all. my surgeon is not hopeful this will cure me. i know it's an 85% sucess rate, and he is a really good surgeon, so i'm sure that's why he is concerned...cause it's not 99%.

any experience's with this surgery, or how you have handled life would be so appreciated. my boyfriend is the only person who actually understands everything about this, and he cares about my health. he doesn't deserve for me to pick a fight.

Please read many of the other threads about the varied surgery outcomes of other members.

Time is the real teller of success or not, could be 6 months -a year or more before you really know.
Due to possible scar tissue regrowth or excess growth.

I just posted a thread about a surgery results study the other day.
http://neurotalk.psychcentral.com/thread144722.html

Neuropathic TOS is the most problematic.
Unless something is clearly showing on the testing /Imaging what the cause of the problem is - did the Dr explain that??.
If not they are just hoping that the rib removal opens up the area and releases the compression,
There are good , moderate and not so good results, but once you surgery you can't go back.

I'm just saying this so you don't go into any surgery thinking it is for sure a cure...and end up disappointed. There are pros & cons but only you can decide what will be best for you.
Do the homework on it so you can feel very confidant of your choices - on surgery and drs.

Other thoughts- for nearly any surgery..
Get at least 2-3 independent opinions if you haven't yet.
Make sure your surgeon is a skilled expert in the surgery.

*Any meds for depression or anxiety?
Many with TOS have something for that in their mix - can help the pain meds work better too.

*What is an avg day pain level for you?

*Have you previously had any phys therapy, body/posture work, or done any kind of self care?

*Have you had quite a bit of testing & ruling out of other causes?
a member put together a post on testing here- http://neurotalk.psychcentral.com/post720246-1.html

*How many years have you done that job?
just curious - my assembly job took about 3 yrs til the first RSI injury and then 1 injury per year till they all combined together 3 yrs later = chronic RSI/probable TOS

boytos has also been finding & posting some alternative therapies that may help with sticky/fibrosis /soft tissue adhesions- check out his threads..

I had surgery with Dr. Avery in SF. He quoted an 85% chance at some improvement. I'm much worse 6 years after surgery.

I would urge you to be very sure before you proceed with surgery. The article Jo-Mar provided a link for says the success rate is more like 36% after 5 years (I think). Many people have some improvement for a short time and then become worse as a result of scar tissue or other less well understood reasons.

It is definitely a bummer to have your life get smaller with less functionality. I completely understand that feeling; I never was able to return to any kind of work. Unfortunately, for many people, surgery is no silver bullet.

I agree with the recommendation to get several opinions if you haven't done so already.

Good luck with whatever you decide.

Kelly

Good advise given to you I fortunatly got the correct surgical results from both surgeons I consulted, and the other specialists I have seen. The 35 percent is fairly acurate.
There are some on this board that say they have gone back to work in 2 weeks and moved on and all is great. What is lacking is there reports back in say 5 years. Will it make it all better...possible (i think everyone has that hope they will be the "one" that moves on and never looks back, will it be worse..very possible, will it be the same, possible, will it improve and then return, very possible. Fact is it seems a life change is necessary no matter what option you choose. Hard for us all, but less is better. it just seems to be the fact, from my observation.
anytime a surgeon quotes you 85 percent chance of complete recovery or higer....run like hell, they are full of ****.
Good luck in whatever you choose, I wait in pain not knowing....waiting to change lifestyle, and hope for the best.
Grieving what you have lost, or may lose is not an easy place to be...and we have all been there before and can cause a hasty decision...takey your time to consider all your options..
cheers
Jay

i have had so many tests i can't remember them all. My surgeon wanted me to do most of them again to rule out any other cause. My recent tests have been, EMG, CT scan with that fluid they inject in you, MRI, x-ray. Everything is fine. they are actually suprised at how healthy i am (which i am thankful for). i only lost stregnth in the very beginning. i havent dropped anything in a few years. i have also consulted with neurologist and orthopedic surgeon. the only thing that came back was that my c-7 on my spine is slightly bulged. This happened because i used to work in a jail where i had to open and close very heavy doors constantly. i was at that job for 2 yrs when it began. i have been at my present job for 4 years now.

i have had 3 rounds of physical therapy. my first two physical therapsits both recommended i have the rib resection done. when this first happened, i couldnt even lay down flat on my back without screaming. i couldnt wear anything that actually touched my chest. the only reason i was diagnosed is because my chest continuously looks like i have a sunburn, my arms and fingers are always swollen, and my pain is extreme. it's more painful on days that i work or do a lot of activity. unfortunately, i do not feel pain while i am doing something, like gardening or cleaning. i feel it hours later, or days later. i am really active, and it has taken years for me to learn how to stop doing things. i now have to evaluate if i think it's worth it (the pain that comes later) and if i have enough time to rest afterwards. i have been in acupunture for two years. it does work - if i went at least 2 times a week. i cannot afford that. i have done massage therapy also, my desk at work is ergonomically correct. however, my manager will not make any other adjustments for me, saying some of the actions are an essential part of my job, like filing for example, that if i cannot do it i will have to be on disabiltiy. being permanently disabled is my worst fear. so i have lived with it. i have decided to do that surgery because my pain is so high. it is always at least a 4 (1-10) on meds, and does get as high as an 8 on meds. i have had to take off work to just rest. between that and all my dr appointmetns i have no vacation or sick time left, and i now have to be on disabiltiy for my recovery.

i am also on well-butrin, 150mg(?) twice a day. that has helped. i am already very anxiety prone. i have lost many friendships over this because people just do not understand. it took years for even my family to understand. i can say that it has become better than when it first happened. at that point, my hand were so swollen that my fingers actually touched. that's the only reason why i stopped working - because i wasnt allowed to work. i actually have a very high pain tolerance, and it took my job saying i am a liabiltiy to them for me to stay home and my work comp case to start to get nasty. i settled that in 2006 and will never work in law enforcment again.

i take breaks away from desk and walk around. i sit correctly with my keyboard in my lap, feet on a stool, and my monitor where i can look down slightly at it. i cannot look up at anything for too long. my life has nearly stopped. i am not able to do anything after i work. i have to rest now. i can't even walk the dog. that's why i decided to have surgery. my next option for the pain is a phyntenol patch. i just can't do that. i cried when my dr. put me on methadone. none of the other pain meds work though. i have tried them all, and every anti deprassant that helps with pain, and everything for neuropathic pain (gababpentin etc..). i'm at the end of my rope, literally.

i am not married, and have always supported myself, even when i was married. i know the only thing that will really help is if i stop working. i cannot think of any job where there isnt some type of activity that will aggrevate it. if you have any suggestions for any type of career change i am all ears. i have wanted to go to law school, even have my lsats done, i just cant because i cannot sit a desk like that. i'm ok with giving up law school, i'm just not ok giving up my life.

i really appreciate you responding, thank you.

i think i actually saw him in 2006, a year after being diagnosed. he was retiring though so he couldnt take me as a new patient.

are you permantly disabled now? how did that happen? if you don't mind me asking. i have been trying to avoid it for years. i lie to my dr and say i am functioning. becasue of my work comp case, i know what to say and what not to say in order to be able to continue to work. i am scared to be permantly disabled, even though i know it's probably the best thing for me. i am scared i will not have good medical insurance, and not be able to support myself.

What kind of surgeon is the doc? A vascular surgeon? How many TOS surgeries has he performed? I'm surprised he gave you a diagnosis of neurogenic TOS if you also have swelling and redness. Have you ever had any vascular studies done?

I had right rib resection Oct. 13, 2010. I too was so afraid and scared but I knew it was the way to go. I had read every thread out there and was anticipating the worst pain ever and long recovery time. But here is what actually happened. I had surgery at 12:00 pm was out of surgery and the recovery room by 4:30. I was pretty awake that evening and talking to the nurse when she realized my pain pump hadn't been hooked up for about 3 hours. She felt so bad but I wasn't feeling any pain. The next day I stayed on the pain pump but didn't need to press the button very often. I stayed in the hospital for 2 nights pain free. Went home with pain killers but didn't have to use them very much. No problems sleeping in bed although I had heard horror stories about sleeping. Showering was no problem since I had no stitches on the outside of my incision but rather glue. My surgery was on a Wednesday by the following Wednesday (7 days later) I was so bored I went back to work for a 1/2 day. I did that for about 5 days and then just went back full time. So what I'm saying is that it really was no big deal for me. My doctor even gave me my rib! Was it a success? I know it was at least 75% effective...my right arm and hand were so cold before and now they're not. I still have some issues with my right hand being weak but it is getting better just no 100% yet. We aren't sure what caused this in the first place. I've had something that affected my entire right side with weakness and atrophy. The weakness in my leg is getting better but no the atrophy. Good luck to you and let us know how you're doing. Susanne

all of my tests came back negative. all my nerves are good, adn he said he could see that my veins have not been affected. i am not sure how many surgeries he has done. i know he is the best thoracic surgeon in my area. medical school at harvard, internship and fellowship, and he is highly in demand.

thank you! i want to keep in touch. how much pain were you in before? were you already on pain meds?