Richard - I don't know if there's one preferred approach. Neither surgeon I talked to performed just the scalentomy. For me, my 1st rib had to go as I had a large bone growth on it. It's been 5+ years and I am so glad I tried the surgery. Suspicion is I have triggered TOS on the other side due to a shoulder injury/surgery but I'm predisposed on this side, too, due to a cervical rib.

I am 8 week post surgery and am in more pain now than before surgery! I had the first rib resected on the right side through the arm pit and my right arm has been on fire every sense, the middle two finger of my right hand feel like they have been hit with a hammer. I am taking 1200 mg of neurotin a day to make the pain tolerable but this is very difficult to deal with.
Has any one else exeriance these symptoms?




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[B][COLOR="Red"]I copied your post here to a new thread of your own - so we can say hello, you can find it on this page - http://neurotalk.psychcentral.com/thread119722.html

I think recovery has a lot to do with the experience of the surgeon.

In October of 2008 a man hit me head on, it was a high speed violent crash. The area we live in isnt the best for experienced Doctors, so I decided that it was worth the two hour drive to a orthopedic doctor with a great reputation. At first he suspected TOS, but was reluctant to make a diagnosis until more time had passed. IIRC it was about my 4th appointment that he pretty much made the diagnosis of TOS and then refered me to a specialist.
The specialist was about 4-5 hours from my house, but he had one of the best reputations in the surgical world, so I felt fairly confident that I was in good hands.
I've never been the type to complain of pain, even when they were doing the nerve tests it never really bothered me that much, maybe I just had a high threashold to pain, IDK. Anyhoo, he diagnosed me with bilateral TOS in Aug 09, that is when it really hit home.
I already knew that my life changed forever due to all of this, long gone were the days of riding quads and drag racing. I was lucky to be alive and I knew that it was still a better deal to be here and have to give up a few things than to have died that day.
I remember being in his office and it over looked the entire city, and I was staring out admiring the view and couldn't really concentrate on what was being said, but I remember my husband saying "how soon can you do the surgery, I don't want her living like this anymore"
The surgery was scheduled rather quiclky, and from that moment on I went into extrememe PMS mode, I was so scared and I honestly thought I was going to die, not from the surgery but from being put to sleep.
We went down the night before and stayed in a hotel, I didn't sleep at all.
The morning of the surgery was the worst, I think it was the annticipation of not knowing how I was going to come out of this that was what made me sick. But I also knew this was my ONLY shot at a some what normal life again. I littlerly broke into tears when the nurse put the IV in my arm, and I begged the anistiologist not to tell me when he put the sleeping stuff into me. At first he thought I was a control freak, but I explained to him in tears, how I saw that man cross the double yellow line and I knew it was comming, and in a moment I knew that I might not make it that day. I don't want to know when I'm going to go, I want to enjoy my life to the last second, not live in fear. I don't know if anyone can understand what I mean by that.
I dozed off with my husband by my side holding my hand, and if I wouldn't have made it- At least he was there.
I grogily woke up as they were wheeling me into a elevator and I saw the back of my husband, but he didn't know I was there, I was too weak and could even say anything but I was throwing a fit. I remember the nurse saying what is wrong and then he turned around. From that moment on he didn't leave my side, poor guy even slept in a hospital chair even tough we had a hotel room for him. I think I was back in the room around 1pm, and I didn't do much but sleep until about 7pm. At first I needed help getting to the bathroom, but it was just walking. I think it was probally among the top of my most embarrising moments, but I got my period during the surgery, so ugh nevermind. Anyhoo, after aboout 10pm I started to get up and go to the bathroom myself by sheer determination. Hubby was asleep and I didn't have the heart to wake him, after the long drive the day before and I knew he didn't sleep a wink either, so I just wanted to try. It seemed like I had to go every hour. I learned quickly that when I had to cough, it was soothed a lot more when he placed his had on my back, just the weight of his hand helped with the pain. The biggest complaint I had was the little plastic contraption that measured lung compacity, and it was so hard to do, but every time I did it it got better.
The next morning they took the tube out of my chest, that was quite painfull and sent me home with some morphine pills and oxycontin.
The drive home wasn't bad, I expected much worse. I think it has alot to do with the fact that we took the Escalade with us, and that has a very smooth ride. It felt like it took a long time to get home.
I took it easy for a few days and didn't really do to much. Before I left I made sure ALL the laundry was done and we have enough clothes to last a month or more. I had alot of people that said they would help with the house work, but I never really felt comfterable with someone doing my chores.Before I left I did thorough reasearch to the best of my ability on what to expect, and was even at the point where I wanted to take the dishes out of the cabinets so I would be able to access them, but in the end it wasn't neccissary. I learned to use my other hand and arm for a lot of things and before I knew it I was back to normal. To this day I still use my other arm for anything that I can. I read stories of people sleeping in recliners and not being able to walk, none of that really applied to me. Most people couldn't even tell that I had the surgery done. I wasn't allowed to drive for a few weeks, but it wasn't a big deal. I was told by local Doctors that I might never go back to my job, but in January I did. Somedays it sucks, but I can't let TOS win. During the surgery some of the nerves were cut, so I have weird sensations in my arm, most if not all will completely disappear with time. Other than that I feel like the whole thing went rather smoothly and I am happy that I went threw it because I honestly believe that it gave me a new lease on life. There will alwasy be things that I can no longer do, but atleast now I can go to work and still do normal things. I have yet to have the other side done, mostly because it doesn't give me enough of a problem to justify the second surgery. I think the surgery is major, and anyone considering it should also consider the long term affects because without a experienced doctor, the results can be devistating. I was lucky and had a wonderfull doctor that not only had excellent skill, but also was very caring and compassionate.


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I copied this post to a new thread for new member & greetings -
http://neurotalk.psychcentral.com/sh...d.php?t=123168

Primarily to Hair Girl:

I think it has to do with so many factors - HOW did you get TOS, a car accident, or like me over time on a computer, etc.

Then, who's your surgeon - hospital, etc.? That's why we list those docs...but even that can't guarantee anything.

And then how you act afterwards - trying all you can NOT to make scar tissue, listening to your body and speaking up for yourself against docs or PTs who think they know but have never had it!

Lastly TIME. I've had this 8 years. I got surgery in "06, so 2 years ago, and my pain is less. Less if not almost all headaches, and honey, they used to be so horrid I just laid and the tears melted down my face - not even crying, just tears melting...I prayed, "God, why, help me, either take me or stop this, but why?"

Now it's better. Mostly I think because I found the pain meds and light massage that WORK FOR ME. I walk only when and how far I can. I don't get bugged by people anymore - they can say what they want - I know what I have, and it's not psychological at all. It's a nerve injury.

God bless us all and HANG in there. Yes, I still have horrific times...but I don't die - they go, eventually. Get home care somehow if you need it - social worker, or how? Get it. That helped me so much when I found a lady who just knows where the painful nerve spots are.

I am so glad to have found this website, I am 4 wks post 1st rib resection on the left and feel very similar to you. I have supposedly the best dr. in the area and trust that things went well but am in so much pain in the armpit down to my wrist. My chest pain is improved but now the pain seems to extend up to my neck. Have you done any physical therapy? I'm a nurse and can not see spending my life on pain meds as I won't be able to treat others. My dr. says it just takes time. and that even 2 months is still early.

Hi there,

I know this is pretty late to be adding to the thread was started a while ago, but I'm new on here thought I'd add my experiences seeing as I just had my cervical rib removal on 24th August. Before that I spent hours searching the internet to find out how other people had got on after the op so thought I'd contribute!

The procedure was supra-clavicular and I had the scalene muscle as well as the right cervical rib removed as it was constricting the subclavian artery and I was experiencing emboli in my fingernails as a result, as well as a pulsing mass in my neck (an early aneurysm as it turns out).

1.How was it right after surgery? Day of? The first couple days?
The surgery took 4 hours but went to plan and when I woke up my whole shoulder was completely numb, so had no pain at all. The worst thing was actually the nausea - I was in recovery for a couple of hours before they got it under control. I was attached to a patient-controlled analgesia pump (morphine) so during the night and the next day I used this and had very little pain. I was pretty wiped out, and drifted in and out for about 12 hours after the op.

2.What was it was like when you left the hospital?
I was discharged 44hours after the operation and although I was stiff and sore, I managed fine on 4g paracetamol/day. Definitely get someone who's a smooth driver to get you home though!
The thing I have found most difficult is being able to find a comfortable position to sleep in - the first week I basically had a pile of pillows and slept on my back, although I'm naturally a side-sleeper. After a couple of weeks I was more able to lie on my side, with a pillow to support the weight of my arm.

3.What was it like getting around?
My shoulder was stiff so reaching for things was difficult, but my doctors had told me to keep it moving and the physiotherapist had given me exercises to do so it didn't freeze, so it started to get more mobile fairly quickly.
I mostly found that I got tired much more quickly than I ever have before - I'm 26 and a gym-bunny so it was a shock to find how difficult it was just to walk down the road when I first ventured out about a week after the op.

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing?
I was tired for the first week or so, I think due to the general anaesthetic and the trauma to my body, but I could shower by myself and get dressed (but only in clothes that didn't involve me lifting my arm!).
The only thing I really struggled with was brushing my hair, which I had to enlist help with!

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?
I had an incision above my collarbone and was told to leave the dressings on for the first 2 days and then change it every 2 days after until it was completely sealed at 7-10 days. As my chest is now pretty much numb on the right side (my T1 nerve was also caught over my rib, so was stretched in surgery) I didn't have much problem in changing the dressings myself, but it's useful to have someone to help.
The incision was really neat and was stitched closed with subcutaneous stitches, so no need to have them removed.

6.How did you manage pain? Did you need ice a lot?
I was told to use a hot water bottle on my shoulder to relax the muscles, and it did seem to help. Other than that, I just stayed on top of taking my paracetamol 4x a day and made sure I rested up and didn't overdo it. It can get frustrating to be sitting around, but it's just not worth making yourself feel worse.

7.What was it like the first couple of days?
(see above)

8.The first week?
9.The second week?
I got back on my feet fairly quickly (I think I've been fairly lucky with my recovery time) and started back at uni after 2.5 weeks. My shoulder is still painful sometimes, especially when I'm on my feet a lot (my trapezius is tending to cramp up a lot) but I'm getting back to my normal routine and don't find that it's limiting me too much at this point (3.5 weeks post op)... my physio said I can start going to the gym again (as long as I take it easy) and I've got to start building up the strength in that arm as well.
The wound healed pretty well and now I'm massaging it with bio-oil as advised and it's getting much less noticable

10.a month post op?
11.two months post op? etc.?
Don't know yet!

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?
Luckily my boyfriend has been amazing and doing most of this for me. I still have limited mobility in my neck, but my physio thinks I should be able to drive again soon.

13.How active were you, ie. walking around?
I tried to get up and about quite quickly, but the first week or so I did feel wiped out. Going out for 30mins at a time were more than enough for me at the start, but I'm now doing normal days and am feeling more myself.


Like I say, I seem to be lucky with my recovery time and I actually think the numbness across my chest (including my incision site) may have actually made it more bearable pain-wise, especially in the first couple of weeks.

I just thought I'd post as it can be scary hearing about everything that can go wrong before the op, but it can go right. I'm actually grateful that in my case it was arterial TOS as it meant I didn't have a lot of choice about whether or not to have surgery as the risk of not going ahead were too high. I'm just keeping my fingers crossed that my subclavian artery will be in good shape when I go for my 6-week follow up with my surgeon and will have repaired itself without further intervention.

I am new to this site and your posts have been very educational. My daugher is facing
1st rib removal and I would like to ask if your surgeries were performed by vascular or orthopedic surgeons??? Thanks so much. We are a little confused right now and looking for referrals in Atlanta GA.

Welcome

Sorry your daughter has been dxd with TOS. TOS is quite miserable to live with. You have found the right place for support and answers.

Confusion is part of it. There's a lot of complex things that goes along with TOS. Please, just don't rush into surgery. Get your answers before surgery. There's lots of resources here.

This is the Doctor's link. It's at the top of the TOS page here.

http://neurotalk.psychcentral.com/thread135.html
Scroll down to GA.

I was happy to see my wonderful cardiothoracic surgeon listed in KY, Dr. Atasoy. He's the only one listed too. He helped me a lot, with my other medical problems too. I found him 4 1/2 years after my accident. So I had been through the mill by then. He recommended surgery for me but I did not have that. Long story...

This is a painful condition, so that's normal. not sure if you're describing a more serious form of TOS. The after care by other healthcare providers needs to be TOS trained.

So many things about TOS.

Just look around, ask specific questions. We'll help all we can.

Useful links:

TIPS FOR TOS:
http://neurotalk.psychcentral.com/sh...highlight=tips

http://neurotalk.psychcentral.com/sh...highlight=tips

http://neurotalk.psychcentral.com/sh...ht=tips&page=2

We do understand. And again, so sorry she has TOS...

FYI My diagnosis and surgery was performed by a vascular surgeon.

Thanks and good luck!

Hi Bex - and others,

I like you searched the internet for advice months prior to my surgery, and struggled to find positive accounts and constructive advice. Cheers for taking the time to post it up Bex!

I had a left cervical rib removal just last week, 20th Sep. It was impinging on the main artery as well as the nerves.

I am in quite a bit of pain but managing it with paracetomol and gabapentin (for nerve pain). I also have very limited mobility, and a lot of stiffness but I know that is to be expected from what I've read here.
I am pretty in the dark however about recovery time and what I will and won't be able to to do over the next few weeks and months. Accounts seem to vary so much don't they?

Bex - please keep me posted as I'd love to know how you get on. I am also very active, 30 years old and used to going running/ do yoga regularly. I'm hoping I'll be able to do that again in the not too distant future, but it seems a million miles away right now!!! I'm surprised you're going to the gym, is jogging etc. ok for you after so short a recovery time?

All best,
SpareRib