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I need another surgery but can't do it for 3 months

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Posted 4/1/2017 5:59 PM (GMT 0)
I have thoracic outlet syndrome. I had my top left rib removed 2 years ago due to immense pain and a clot it caused. I also have the same condition on the right side but this time it's purely pain. No clot. I go to PT 3x a week to push the rib down and relax my scalene. My LLMD Wont clear me to get it out until I go through 3 more months of treatment because she's afraid of the massive surgery trauma causing me to backtrack tremendously. Idk what to do. I'm in pain all the time. I was supposed to get the rib out last year but I was still too sick. I'm trying to persuade my doc to let me do a shorter cycle and get it out then do the same cycle after the surgery. If it wasn't for my rib pain from TOS I think I would be able to handle my Lyme more easily. ****. I hate my life. Just needed to vent. I also had my gallbladder out 3 months ago and she wants me to recover more before I get another surgery. I agree with her reasoning but I'm leaning to refusing her request of a 3 month plan and do 2 more months instead. I wish I could get the rib out tomorrow. Itd a brutal surgery and tough recovery but I've been through it once. I have the best vascular surgeon, for this surgery, on the east coast doing it and I just wanna get it done!!!! F$&KKKKK!!!!
Posted 4/1/2017 6:05 PM (GMT 0)
LIWTC - I'm sorry you're having this issue to deal with.

So - is it the top rib you're having removed?

My chiropractor said I had TOS when I first presented with my pain. I put that diagnosis on the back burner when I was diagnosed with lyme. No other medical professional has agreed with the TOS diagnosis in my case.

I had read about the dangers of it affecting blood vessels...and now your post has stirred up my worries again.

Is there anything you can do that gives you relief from the pain?

Three months seems like an eternity when you're dealing with that.....

(((hugs)))
Posted 4/1/2017 6:17 PM (GMT 0)
My diagnosis is spot on. I def have it and the rib will not stay down. The first surgery really helped me. My surgeon says he will do it whenever I'm ready. He's not a Lyme guy though. There's really nothing I can do. PT, Advil and Tylonel help a little. I just need to fight through the agony. If you live anywhere near Hopkins you should get an appointment and go see this guy. He's the best. 3 doctors said I didn't have it. Went to him and he found the blood clot. Also said I he it on the other side but wouldn't take it out due to it only causing pain and no vascular issue. Now since PT didn't work he is willing to take it out.
Posted 4/1/2017 7:09 PM (GMT 0)
I'm so sorry LIWTC. I cringe when I hear of someone needing surgery, but there are times it just can't be avoided.
Sounds like an awful thing to have to live with.

I wonder if a lidocain patch would help you.
Posted 4/1/2017 7:32 PM (GMT 0)

LymeIsWorseThanCancer said...
My diagnosis is spot on. I def have it and the rib will not stay down. The first surgery really helped me. My surgeon says he will do it whenever I'm ready. He's not a Lyme guy though. There's really nothing I can do. PT, Advil and Tylonel help a little. I just need to fight through the agony. If you live anywhere near Hopkins you should get an appointment and go see this guy. He's the best. 3 doctors said I didn't have it. Went to him and he found the blood clot. Also said I he it on the other side but wouldn't take it out due to it only causing pain and no vascular issue. Now since PT didn't work he is willing to take it out.

I live too far away...BC, Canada.

Can you actually feel the rib when it's up? i wasn't as worried until I read about the Vascular form of it.

Do you have better days...or parts of day - when you're not suffering so much?

I know three months seems like an eternity...but at least there is a surgery date...and you will get relief..

Hang in there!
Posted 4/1/2017 7:46 PM (GMT 0)
Hi, I'm so sorry you are suffering not only with severe pain, but with the complications of having to wait for surgery due to treating Lyme.

I understand how difficult this must be for you, is there any way your llmd and surgeon could discuss this situation together. Working together they might be able to do the surgery sooner.

I think the llmd should also understand that the stress you are facing due to all of this severe pain could hamper your Lyme recovery.

Since your battling multiple things, for your sake ,all doctors involved should take a step back from just focusing on their individual specialty, and come together with a overall beneficial plan for you.

I also wondered if biofeedback and/or relaxation therapy would be somewhat helpful for the pain. I'm not sure what they do currently but in the past(20 to 25 years ago) it was helpful for me with severe pain.
Never got rid of all of it, but did help me cope a bit.
Take care and I sure wish I could take this pain away for you. Sincerely, Jo
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