TOS Sufferer - post surgery complications
 

I had Thoracic Outlet Syndrome surgery this year and it did not go as planned. I suffered paralysis to the Phrenic Nerve during surgery and my left diaphragm is paralyzed. I am told this is permanent but am looking for others that may have experienced this, and might be able to share their outcomes with me. My Long Thoracic Nerve was also damaged and my shoulder is now badly winging, although my Orthopedic Surgeon feels that this is temporary (due to being overstretched during surgery) and may come back over time. I am in an extreme amount of pain, feel like I am having a heart attack, cannot walk any distance or talk for long and am on oxygen. My chest feels like it is being crushed. This surgery has changed my life and I am hoping others that may have experienced "surgeries gone wrong" might offer me some hope that there is a light at the end of the tunnel. Thanks

Hello & welcome,
I made a copy of your post and placed it on the Thoracic outlet syndrome forum also.
I hope we can help.:grouphug:

Your nerve is probably also causing muscles to spasm around the chest. {inter coastal nerve?}

Hi, I'm so sorry that you've had this complication - VERY scary!!

You need to talk with forum member "Horizontal Helen" - she's had breathing problems as well.

I am curious to know where your surgery was preformed and by whom. You could PM me that if you aren't comfortable posting it.

My Long Thoracic? (what I suspect anyway as the problem?) occasionally becomes irritated (by wearing a bra for too long or overdoing any physical activity) and I have breathing problems. Sometimes scary enough that I run to the local fire station for help. Are you able to apply ice to painful or irritated areas?

I will say that over the past 5 years my burning and other nerve pain has lessened... but it always comes back - either because I did something I shouldn't have, or due to weather changes.

Good luck to you, I hope that these serious effects will subside when your nerves have calmed down or regenerated.

Anne
:hug:

Welcome to NeuroTalk

We're here to listen to you. :hug:

So sorry you're having more problems with TOS related issues. TOS certainly can put the hurt on ya.

I pray your pain pattern changes quickly and you find relief somehow.

Let us know if you need to know how to get around on the board.

welcome
 

Hi,
can't help....I had a good surgeon went in supraclavicularly and did a great job for the vasular side still have issues with neuro side......

however this sounds kinda weird to me.....like an error they may not have told you of????? anyhow not sure on your surgeon and if he/she has done many surgeries and which way then went in to fix your tos!!

hope somebody can help....but welcome....hope we can help with other issues!!!

hugs,
Victoria:hug:

Hi,
You can ask for your doctor's surgical notes and read through them. It may shed some light on it? I also have TOS and had my right 1st rib removed in May of this year and have not healed yet.
Question: what is winged mean?
they removed mine through my armpit and it still feels like I'm packin a football around. My chest and upper arm and armpit are still very swollen and painful.
I hope you find answers:hug:

winged
 

confetti,
winged is where the shoulder blade on one side tries to reach out to the shoulder blade on the other side, whether you want it to or not.