Tracy,
 

Hi Hon,
I have waited to post as I was a bit concerned about both sides being done so closely together as well. I had my left side, (dominant side) done in Nov. 05 and am just now feeling pretty good. I don't drive, or cook, or shop, or clean.... I just take care of me!! I am Bi- lateral as well and have decided not to do the right side at this time.

My Dr. told me it would take at least 6 months for the swelling of the surgery to go down, and it took that long! My 1st rib and 2 of my scalenes were removed and my neck and brachial plexus were swollen and lopsided for a good 4 months. Bending over/ forward were and still are very difficult. I still can't lift anything much heavier than 1 lb. I can barely lift say, a bleach bottle. We get milk in 1/2 gallon containers so I can lift it.

And the breathing! Oh my Gosh, that is so painful for the longest time! At least for me it was. The drive home from the hospital was brutal, so yes !! Take tons of pillows and be sure you are plenty medicated if it is a long drive!

I hate to be a downer, and I don't want to be discouraging, but you did ask for people's experiences and I have to be honest and say I myself wouldn't dream of doing the second side so soon! :(

If they take out the 1st rib and any muscles, it is like changing the architecture of a building and expecting it to be as solid and balanced as it was prior, or at least that is the analogy my Surgeon gave me. He wanted me to wait 6 months for the swelling to go down and healing to take place before I began strengthening the muscles and learning how to use my body with the lesser "support structures". He had me work on posture and stretching, but did not want me using my arms or turning my head or having josteled too much. I wear a soft cervical collar and use neck and elbow pillows when ever I am in the car.

Maybe my Tos was different from yours, maybe the compression was in a different area, or more nerves involved than yours?? Or maybe it is because I was 47, ( maybe you are younger than I am and able to heal faster??)

I am concerned for you that you are going to be in for alot of pain doing both sides, and also a looooonnng recovery! A week's worth of help seems like it isn't going to be enough to me....:eek: Can the in-laws stay longer??

Geez, I don't mean to be so negative but this is serious surgery!! It took me 3 months just to be able to breathe normally and I have side effects from my surgery, for example my left eye twitches, it doesn't dialate as it used to so I am light sensitive, and need sunglasses sometimes even inside, my TMJ is worse now and will sometimes cause my bite to shift and give me headaches that have me flat on my back in bed even with meds. The pain and swelling in my arm is much better, but I can't return to my former work due to the position you sit in all day, ( I used to be a dental assistant) or any kind of job where my head is down and arms are used extensively. ( or so my Surgeon and Dr. Ellis say.) And the least little bump or jostle of my head or shoulder can put me in misery for days!

So, anyway, those are my thoughts and some of my experiences. I hope that you will at least consider doing your surgeries with more time in between for healing, maybe talk to your Surgeon some more??

Good luck Tracy, and I will pray for you and a wonderful outcome!!
G~ :)

Hi Tracey,
 

I had my right thoracic outlet operated on January of this year.. I had a scalenectomy and resection with neuroplasty of the nerves.. I didn't have a rib removed..

My pain control was good in the hospital and pretty good at home but there were times when it was so painful.. I didn't have use of my right arm for a good month and I wasn't allowed to lift over 3 pounds for 3 months.. It has been close to 10 months and I have started to have some discomfort returning above the clavical and into the shoulder and down to the elbow.. I had a repeat neurography and I now have scar tissue rebuilding in the surgical side which is causing some pressure and irritation to the nerves..

I am also Bilateral and need to have surgery on my left side.. I had hoped to go ahead with that surgery after the first of the year but now I may need to have them clean up the right first and wait on the left..
I myself couldn't imagine having had both sides done at once with the limitations I had on the right side.. My left became my dominate hand for awhile..

I needed help doing so much.. The first month was the hardest for me and I was so glad I had the help I had at the time.. My breathing was bad as I had shortness of breath for at least a month and as everyone said Pillows, Pillows, Pillows... I still can't lift over 4 pounds it is difficult and too heavy for me.. In my previous job I had to lift 80 pounds and now I can't do more than 4 with both arms and hands..

I have had relief with my first surgery as my hands don't cramp up and I have feeling back in my right hand..
As Gromley said this is serious surgery.. Please be careful and have help around for a Long time..

You are in my prayers.. Keep us posted on your outcome..
Best of luck..

((Hugs))
Dawn ;)

OMGOSH! I didn't even think of the lopsidedness! I had a REALLY hard time holding my head to that side without pain. Most of the time I had a pillow on that side of my neck (surgical side) between my face and my shoulder, to hold my head up. How in the WORLD are you going to be able to hold your head up if you are having both sides done at the same time?

TRIX...what type tos do you have? Who is your doctor? And what kind of surgery is this? Are you having a rib removed and scalenes? Did they tell you what will be done? Please let us know, cuz if that IS what's going to be done, hon...this just doesn't sound like the "norm." And there is NO WAY this is going to be easy. It's not easy ANYWAY getting one side done. I couldnt' lift a gallon of milk for at least 6 weeks. I could barely walk up the steps at home until that period of time cuz of the breathing issues (and again, that's only HAVING ONE SIDE DONE).

I would seriusly consider speaking to your doctor...finding out how many of these surgeries he/she has done, and how many of them were BILATERAL...and how many of them were done just a couple of days apart. After my surgery, the first 2-3 days I was still in a fog from the medication. I wasn't even ready to be weaned off of the push button morphine until about day #4 or so, the pain is SO BAD. I cannot imagine with such INTENSE pain after one side, having to go and do it all over again on the other side. You aren't going to be able to do ANYTHING for a very very long time. Not even pick up a fork to eat, if you have both done so close together.

And the head bobbing...if you are having a rib removed and scalanes...think about what is going to help you hold up your head. You will be missing 2 ribs and 4 muscles that help you hold up your head. When having one side done, at least there are 2 muscles and one rib left to help compensate...but when you have both sides done, you are going to get pain from the strain of not having something there to HELP COMPENSATE.

I would seriously...very seriously...ask some qurstions, trix.

Many people will JUMP at the chance at havibg surgery cuz they just want the pain to be over with. And they don't listen to those who have btdt cuz dang, here is MY CHANCE to be free of this awful pain and this is going to fix me! But I an truly begging you to 1). answer the questions we've asked about the type of surgery an what they are doing; and 2). ask the questions of your surgeon that I posted within. Please hon....

we are only looking out for you. This is considered major surgery for just one side. And it's dangerous cuz of that phrenic nerve irritation. I'm so worried about yoru breathing, your pain, and your super long recovery period. I'm 9 months post op and still cannot lift my arm without pain over my head. It takes a LONG TIME to heal from this hon. You should at lest have one good arm (or decent arm) while you do.

Please don't be angry with us. WE've btdt and this doesn't sound right.

Hugs
LisaM

I"m glad you all brought up these points I hope trix has time to read and follow up with the detailed questions to her surgeon.

I thought it was kind of soon for the second one too.
Maybe it is only a scalenectomy?? or pec release?

I hope she does have time to find out the details of what the surgeon has planned.

:( :( :( :( :( :(

Decided not to post.

Sorry it took so long to reply
 

Firstly, I AM NOT ANGRY. You guys are just giving me your experiences and your concern for me makes me feel cared for.
Secondly, I am having my first rib and scalene muscles removed on both sides. I too felt that having both sides done so close together was weird. I am seeing Dr. Bill Nelems at the Kelowna General Hospital in Kelowna B.C.
He is a thoracic surgeon and has done hundreds of these surgeries. Many of them were bi-lateral. A friend of mine that works with my dh had the surgery done about 18 months ago, bi-lateral done 2 days apart. He had a great deal of pain, and he says it was about 4 weeks until he could care for himself. He returned to work 2 months ago on graduated duties, and is now doing everything he used to do before his accident. That being said, he still has good days and bad days and some pain.
My doctor and I have gone over every scenario, and I have full confidence in his abilities. I spoke with the College of Physicians and Surgeons, and they refer Dr.s who want to learn about TOS to train with him. He is the number one TOS Dr. in Canada. He has worked with the Dr.s in Denver.
I spoke with my gp and nuero, and they both support this approach.
While I will most likely be bed ridden for 2 to 3 months, they all feel that I will have a better outcome doing it this way than waiting.
This will also be easier on my family then making them go through this twice.
I hope I have answered all of your questions.
Thankyou all so much for your concern. I wil bring it up to the Dr. again when I see him on Wednesday. It is always best to have all concerns addressed before going forward with something as serious as this.
Thanks, Tracy

Tracy, as long as you realize that you will be in a LOT of pain, and you will NOT be able to return to your normal duties as quickly as it sounded like you thought you would, and you are comfortable with his decision. We will be here for you.

I don't mind telling you that I am actually shedding tears for you, cuz I know the amount of pain I was in after only ONE side being done...and I can only imagine how much pain you will be in after doing it the way you are going to be doing it. I wouldn't be able to ... no way. Is he going in thru the clavicle or the armpit?

It sounded, to me, in your post, like you' only have help for 2 weeks, and like you run a daycare facility. Like you'd only be closing the facility for a couple of weeks, and that you thought almost like you'd be able to open it back up soon.

You said the person you know had the surgery 18 months ago and just returnd to work a couple months ago...that's 16 months recovery. Are you prepared for that, hon?

I looked this surgeon up. I'm like that :) Found all good stuff, but haven't looked him up on this site. Bad thing is, with OBT being down, we can't search for him there, to see if anyone else used him. But I found nothing bad online, so I wish you luck, hon. I really, truly do. And if you can't post afterwards, please have SOMEONE post FOR YOU...okay? Please?

Anything we can do, just ask. We'll all be thinking of you...and praying for a quick recovery.

Hugs
LisaM

I'm glad you posted all that you have discussed w/surgeon and all senarios - i feel a lot more comfortable with it for you.

My best wishes too...
 

It sounds like you are comfortable with your choice to have both sides done, and I respect that. I recieved alot of flack from several of my friends and a Dr. or two about the surgery before I had it ( oh it won't work,you might make things worse, it's a last resort!!, and I was at my wit's end!!) and I am happy with the choice I made.

You sound like a strong, determined,intellingent gal, and I will be counting the days and thinking of you!! Again, you will be in my prayers!

(((HUGS!!)))

G~ :)