Had lobectomy in 2020 still having radiating severe nerve pain.

Posted by mef @mef, Aug 11, 2023

Had upper right lobectomy in 2020. I’m still having severe radiating nerve pain. Anyone else having this?

Interested in more discussions like this? Go to the Lung Cancer Support Group.

@lls8000

@pb50, Ouch!, that all sounds very painful. Four months seems like a long time, I know you won't hesitate to reach out to the pulmonologist office if the pain isn't getting better. Hugs (light delicate hugs). 🙂

Jump to this post

You’re very sweet. It’s been six months since surgery and it is better. I’m sure it will be better yet in four more months. I have RA and I’m accustomed to chronic pain. This is just a new one.
On my better days I easily keep pain relegated to background noise. Some days not so much. 🙂
I tend to not deal with limitations well. Shocking I know. 🙄

REPLY
@pb50

You’re very sweet. It’s been six months since surgery and it is better. I’m sure it will be better yet in four more months. I have RA and I’m accustomed to chronic pain. This is just a new one.
On my better days I easily keep pain relegated to background noise. Some days not so much. 🙂
I tend to not deal with limitations well. Shocking I know. 🙄

Jump to this post

I had an upper left lobectomy in 2022 and still have what feels like strangling tight pain. Gabapentin helps. I originally took 900mg three times a day. I’m down to 300mg twice a day. I have a feeling I will never be pain free but at least it’s now manageable. Good luck to you.

REPLY

I know we are all unique but have you been placed on prednisone anytime in that time? I was put on it two weeks ago for a coincidental RA flare and was shocked to find it helped my rib and diaphragm pain - a lot. It has only been a two week course and low dose at that (20mg for the first four days and then stepping down from there) but I just thought I’d mention.

REPLY
@pb50

I know we are all unique but have you been placed on prednisone anytime in that time? I was put on it two weeks ago for a coincidental RA flare and was shocked to find it helped my rib and diaphragm pain - a lot. It has only been a two week course and low dose at that (20mg for the first four days and then stepping down from there) but I just thought I’d mention.

Jump to this post

My pain feels like it’s my breast. I had the lower right lobe removed in Feb 21 I thought the nerve pain was over. I started with clothing or anything touching my skin & now mr right breast & under stem ache terribly. Am I crazy?

REPLY
@currancl

My pain feels like it’s my breast. I had the lower right lobe removed in Feb 21 I thought the nerve pain was over. I started with clothing or anything touching my skin & now mr right breast & under stem ache terribly. Am I crazy?

Jump to this post

No. I have had breast pain, pain under breast, pain in ribs lateral to breast. Shooting pains across breast and upper abdomen. Mostly that subsided except for the random electrical shooting pain that is usually fleeting. That’s what gabapentin is for but that drug and I don’t get along. Now six months in, I get a random brief jolt but infrequently.

REPLY
@currancl

My pain feels like it’s my breast. I had the lower right lobe removed in Feb 21 I thought the nerve pain was over. I started with clothing or anything touching my skin & now mr right breast & under stem ache terribly. Am I crazy?

Jump to this post

Hi @currancl, Welcome to Mayo Connect, I'm glad that you found us. I'm sorry to hear that you are still experiencing this pain. I'm hoping that others here, like Pam (@pb50, who's always helpful!), make you feel like what you are feeling is real, and unfortunately not all that uncommon. I can't image living with this type of chronic pain after 2 1/2 years. Has your doctor had any suggestions?

REPLY

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.

REPLY
@pb50

No. I have had breast pain, pain under breast, pain in ribs lateral to breast. Shooting pains across breast and upper abdomen. Mostly that subsided except for the random electrical shooting pain that is usually fleeting. That’s what gabapentin is for but that drug and I don’t get along. Now six months in, I get a random brief jolt but infrequently.

Jump to this post

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

REPLY
@lls8000

Hi @currancl, Welcome to Mayo Connect, I'm glad that you found us. I'm sorry to hear that you are still experiencing this pain. I'm hoping that others here, like Pam (@pb50, who's always helpful!), make you feel like what you are feeling is real, and unfortunately not all that uncommon. I can't image living with this type of chronic pain after 2 1/2 years. Has your doctor had any suggestions?

Jump to this post

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☺️

REPLY
@currancl

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

Jump to this post

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.

REPLY
Please sign in or register to post a reply.