Had lobectomy in 2020 still having radiating severe nerve pain.

@pb50

Thanks Pam, I haven’t been given Prednisone but I’ll ask my pain doctor. The injections are steroids but I can only get them 4 times a year. Thanks for your feedback and glad the Prednisone helped you!

Juliette have you tried Prednisone or another steroid? I was given it for an unrelated RA flare and for me it was a miraculous improvement. We’re all unique but thought I’d mention it.

I wanted to thank everyone for their comments in this thread. It helps us all know we are not alone in dealing with this. The chronic pain from my lower right lobe thoracotomy in 2020 has severely impacted my life. I was wondering if anyone has had access to or tried pain reprocessing therapy?
I try to stay positive but currently am taking 900 mg of gabapentin a day, lidocaine patch on my back and nerve block injections but still cannot do many of the things I would like to and still cannot wear a bra.

I’ve had nerve pain before. This is deep burning pain that’s how I knew. Also, doctors confirmed it.
I’ve been told by doctors that if you have nerve pain for a year that’s it’s going to be permanent.

You know in my research on post lobectomy outcomes, I recall that the upper left was the most
complex one to do because there are more arterial and other connections to undo and redo. That no doubt creates more opportunity for something to hurt!

Ah. Well you have reason to think it could be a bit different than garden variety nerve pain from lobectomy. That variety is simply nerve endings that were cut in surgery reconnecting. It’s like when a light bulb flickers when it doesn’t have a solid connection. Eventually they knit solidly and the electric jolts and toothachy pains resolve.

But… Any nerve pain is essentially like that. Can be like a stabbing, or heat, or quick cramp, or anything that comes and goes.

Well I have a bit of a Medical background years ago in neurophysiology. And I’ve done a fair amount of research on post surgical outcomes of lobectomy. And if you read posts here you will find it’s a common refrain.

Hi Pam, I’ve seen my GP & she sent me for normal mammo & ultrsound & the she Sen to to a breast surgeon. We’re doing a dye screening mammo next week just to be sure it’s not the breast causing the pain. I had radiation just below the right collar bone & the radiologist didn’t think that would cause nerve pain. Thanks for the advice. I see my regular oncologist on 5th December. My tween granddaughter says she’s not going to go anywhere with me if I don’t stop holding my breast☺️

How did you determine it was nerve pain? Thank you for commenting. Wish you to be well.

I would just say that (a) it’s real, (b) you aren’t crazy, and (c) you have to kiss a lot of frogs on the path to relief. 🙄. The Gabapentin- a proven drug for nerve pain - helped me only marginally and made me have wicked scary nightmares. That was one of my frogs 🙂

Prednisone -an old steroid for general inflammation wasn’t even prescribed for rib/diaphragm pain. Didn’t help the RA it was prescribed for very much but helped my post surgical pain a lot. So go figure.

Anyway - I repeat myself just to say pull as many strings as you need to - there’s a solution so don’t give up. I’m sure my pulmonologist has a black star on my file but he tolerates me and my “what about” pretty well. Not like I’m asking him to work for free. I schedule a 15 minute follow up to inquire about some treatment or diagnostic, then I leave.

Don’t give up. Be a pest. But be your own advocate.