Well, I wish I were closer to any one of you because you need a super TOSer visitor to eat all of your ice cream, sleep in your bed and take your nurse home.

I am so sorry you are all not feeling any better. Come on docs!

We love you all so much.






This guy was just walkin' by!

Oh my gosh, that is a total late night BAD joke. Sorry.

Nah, Tam, I think I've eaten more ice cream in the past 2 months than I have in the past 10 years! No joke!

I know it's the Lyrica, luckily its doing the job its supposed to and I've been keeping my weight steady somehow. It's just turned my brain to mush, much more than the Percocets or Valium. I've tried Lyrica by itself, I know it takes away my multiple focus abilities. For me, that means no way I can work effectively, besides the other dangers of working at a CRT all day

Im doing great since my left sided surgery back in Dec04. I was in pain for awhile after but had to have another surgery that had nothing to do with TOS. So its been 2 1/2 yrs and now as long as I dont type too much or drive for too long Im pretty much pain free. I dont take pain medicine anymore..just meds for my psych health..lol...I wont lie it was a long hard road to where I am now but I think with a little faith most of us can get here.

Hi everyone, its been awhile since I've posted TOS was too painful to type.

It's been 2 weeks since my right rib/scalenectomy.

I've noticed the sharp shooting pain is much less, still have some though. Concerned about the amount of numbness and loss of sensation on the underside of my right arm and my upper right chest (incision above collar bone). Has anyone else had this much numbness after surgery? Doc says may be permanent, but I'm really hoping it's not.

I was really happy with my meds post op- the doctor made sure I was pain free for the most part. I'm doing OK now with Percocet, but still have some pain. Just trying to rest and keep mobility in my right arm.

How do I know if the surgery was a success?? The docs seemed really when I told them the sharp shooting pain was gone right after surgery, which was good and I thought the surgery was successful. But slowly pain is starting to come back (sharp shooting, heaviness, achy, pins and needles). It's not as much as before, but I'm worried that the pain will keep progressing and I'll be just like I was before??

How can I help my chances of success?? All the doc said was no lifting and keep mobility to prevent frozen shoulder. I think he wants me to start physio after my 6 week appointment, but I've heard mixed opinions on whether physio does more damage??

I'm wondering if anyone has some tips or things I should try - it's great to have others that have been through this or are going through it now- (even in the hospital I was the only TOS patient in the whole thoracic unit).

Michelle

Hi everyone

I want to thank everyone for all their replies and their well wishes. I really appreciate all your concerns. Last week was a very rough week for me! Every time my husband goes away on business things go nuts around here.

My last message was stating that I quit.... I guess I haven't quit but I am very frustrated. I did a lot of crying last week and really felt like giving up and honestly still feel like giving up. I feel like I've made no progress and I'm so damn tired of the pain! I thought the surgery was going to make things better but I am in more pain and having more trouble than I was before the surgery. This totally sucks!

Toby... I am 4 weeks post up today... I have the same exact numbness that you have. I have numbness all around the incision and up into the right side of my jaw, and in my shoulder and some areas in my arm. I have been worried sick about this. I called the doctor last week because I can pinch myself and I don't feel it. It is a very weird feeling. If I touch around the incision it hurts but yet is numb. Also, I have this weird bumpy feeling everywhere where it is numb. I have had other people feel it and it is creepy. It feels kind of like a rash but you can't see it. This skin is like a very dry and bumpy feeling and it's all over my neck, chest and shoulder. The doctor told me that this may all be permanent especially if it hasn't gone away by four weeks post up. Now I'm freaking out because it's four weeks and it has been going away... not even one bit better.

Yesterday I got so darn mad because the pain is so much worse. I have terrible pain in my neck going down into my shoulder and also upper back around the shoulder blade. It is the sharpest most awful pain. I can't get comfortable sometimes an all I want to do is cry. I can't even move my arm.
I can't even hold my husband's hand which I could at least do before the surgery. I cannot put my arm down. I can only hold it at waist level and my hand basically at my chest. It really stinks to not be able to move my arm in any direction other than towards my chest. I can't move it out or down. It feels like a pulley. I feel like my shoulder is keeping my arm from moving like a very tight pulley feeling and if I move my arm it will snap. It hurts so bad that I can't even get to that point. What the heck is going on?

The surgeon released the nerves and felt that I would have success from the surgery and get better. I think he was wrong. I am now starting to regret having it. Now I went through all this and have a nasty incision and all for nothing? I am on more medicine now than I have ever been in my life!

My doctor just upped my nerve medicine(Neurontin) to 300 mg 3x a day. I am still on the avinza (morphine) and ibuprofen. I tried to come off the morphine but I still can't tolerate the pain level.

I still can only wear button-down shirts and I live in pajamas. I got out of the house the other day to go to the store and that was difficult. Of course I didn't drive. This medicine makes me loopy and I can't even walk in a straight line. I then tried to go tour a school that my son is looking at attending next year... I didn't make it very long. I felt bad and I feel bad because I can't go anywhere and I can't drive my kids anywhere. They are going to be human popsicles walking to and from school.

Well I have to go rest my voice since I am using the voice software. Also my 18 year old stepson moved out last night so things are changing. My daughter is with my ex-husband and now we are down to four. I lost two kids in a month. It is just crazy. The 18-year-old decided to quit school last week and move out. I have no idea what his plans are for life but I guess that is his problem. We did everything we could.

Have a great day... momz

momz- don't know if i mentioned this or not, but I was numb around my incision for many weeks. I don't kow exactly how long because one day it just wasn't really there any more except for a very small area.

It also took me 6 weeks to get back to pre surgery pain levels, then it got better after that, slowly. Still not great, but it is better.

try not to expect too much too fast. when is your follow up w/ the surgeon? Has the hard chest thing gone away yet? Can you take a deep breath? That was concerning when you mentioned it before.

Johanna

Hi Everyone,

Just wanted to give a quick update. I am now 4 weeks post -op. There was been struggles and pain all along, but I am beginning to feel much better. The nerve pain I have is comparable to pre-op. The numbness is beganing to wear off. My surgery was through the arm pit on left side. I still wear out easily, nad I do still have pain but I think I am now on the downward end of it. I have put alot of faith into this surgery and I pray daily it works.
The first three weeks were torture. Alot of pain and discomfort. All surgical pain. I had a lot of nerve pain starting week 2 and through to now. This week there has been a huge difference. I still need to take it easy and if I over do it, pain is there.
I hope everyone who has had surgeries recently are getting along better.

Take Care
Rach

Hi Rachel and everyone else

I too am now 4 weeks post up but not having as good of luck as Rachel. I am still having a very rough time and in lots of pain. The other day I got so mad that I just kicking things and crying saying how I wish I wouldn't have bothered with this surgery. I don't know if the surgery was worth it. I have more pain now than I had prior to the surgery. I know that this takes time so I am still waiting it out but very frustrated. I have only been out of the house twice since my surgery and I am starting to go crazy. I want to do things can't. I still can't even turn my head or use my right arm. My surgery was through the neck and the incision looks pretty good... I have some pictures but I don't know how to post them on here. It is still very swollen though around the incision and also completely numb which also goes down into my chest and shoulder.

Johanna... my right side of the chest is still a little hard but I am breathing okay. When I take a deep breath it still hurts a little bit into my neck. Also, laughing and Coughing about kills me. We're watching a funny movie and I was laughing but crying more because it hurts so bad. I hate it! I hate all of this! It's starting to get me down but I'm trying to fight. It just seems like this TOS is winning. I don't know if my life will ever be the same at this point. I was told at the numbness didn't go away by now that I will probably always have it.

Also, I got really upset because I noticed that I seem to be lopsided now. My right side is up higher than my left and very noticeable. My husband thinks it might be because I'm so tight and tensed up on the right side. I sure hope that's it. He thinks I may just need the therapy to keep me from staying that way and being so tight. And does anyone else have this problem?

I also still have bumpy skin which they said probably won't go away. My voice comes and goes. One day it will be fine and the next day it will be all crackly. I don't get it! Also if I talk a lot to more pain I have and the worse my voice gets. I can't tolerate talking a lot. I really don't like having any company! Last week I had a meeting at my house for my daughter and talked for two hours straight... I thought I was going to die!

Does anyone have trouble with really bad headaches? IKEA it excruciating pain right at the base of my head top of my neck on the right side. It hurts to even touch that whole area! When I get this headache it comes on real fast out of nowhere... usually when I'm sitting and doing nothing it happens. Last night it was so bad that I couldn't even open my eyes. I also still have ringing in the ears and a stuffy feeling that I had before.

Unfortunately I feel like I have no improvement if this is permanent I will be very upset because I went through this surgery for nothing. I now have a scar as well.

I am concerned about tightness that I have under my arm to the left of the armpit into the chest and also around towards the back. I feel like my arm is spring-loaded and if I move a certain way it will snap. It's a very tight and hurts... it even hurts to touch those areas. Very tender muscles so I wonder if something is missing here and if those muscles pressing on nerves.

I still have numbness and tingling very bad in the right-hand and also color changes. My hand can be white as paper and then my fingers can also turn bluish purple. It's freaking me now. I also still get the cold hand and it also happens on the left side now as well.

Anybody know what to do from here and how I should go about all of this? I'm very scared and lost and so is my family. They are very concerned about me at this point. I go back to see the surgeon on the 22nd but honestly I don't think he will have any answers... he is just a surgeon.

I do have a pain management doctor and I think I will talk to her as well. I honestly think something is wrong and being missed.

I really appreciate all of your concerns and your support. I am so glad to be part of this group. You are wonderful! Thanks again

Momz

Momz,

Tomorrow I will be 10 weeks post-op from left side full scalenectomy & neurolysis. Look back at my posts for the details.

The first two weeks were OK, then the nerves started to wake up and the hellish nightmare went into full gear. I've only really turned the corner the past week or so. I was told from the start to expect a 12 week recovery.

I haven't been able to type with my left at all, and found that simple things just like cradling the mail between my left thumb and index finger would trigger a major flare, even with all the Percocet, Lyrica, and Valium.

One other thing that would trigger a major flare is getting off track with meds..I've had to set alarms and write everything down to make sure I don't miss doses. It'd take up to a full day to get back on track.

So don't despair too much, I think you're on the right track. At least TRY not to use your right hand for anything weight-bearing for a day, and see what happens. You've had major surgery, and it sound like you've now got inflammation from doing way too much too soon after surgery.

For the scar, I HIGHLY recommend NEOSPORIN® SCAR SOLUTION® Silicone Scar Sheets

I used them on my neck after a similar size scar from cervical spinal fusion, you have to look REALLY hard right now to see it.

Marabunta. (writing all this right-handed, I'm on a Mac and made the mistake of buying iListen, which doesn't work at all.)