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?

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@currancl

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☺️

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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.

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@dianemusic

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.

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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!

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@currancl

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

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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.

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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.

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@marshall8318

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.

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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.

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@pb50

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.

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@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!

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It was a short course low dose. But fwiw, as the steroid leaves my system, so does the benefit 🙁 a

I try to be glad that I learned the pain is fundamentally inflammation

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@marshall8318

@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!

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I hope it helps you!

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@currancl

I hope it helps you!

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Thanks. I don’t know if my experience is typical. Now off for 48 hours, the Prednisone has worn off and sadly so has the benefit. I was so relieved to have my rib and diaphragm pain and tension gone. But I’ve messaged my rheumatologist to ask what now. I’m just glad that the issue is inflammation and not something worse. Maybe it will
Resolve over time.

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@marshall8318

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.

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After buying at least 20 different bras I finally found some that I can wear without triggering the nerve pain.
The first one was called “True” but I can no longer find them. Now I buy Bali it has same material as True. Soft, stretchy, no side stitching. As for the pain you mentioned if it’s nerve pain it seems Gabapentin is the most effective for me. As for other pain talk to your pain management they know what can help.
Good luck & hugs.

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