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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@lls8000

Hi Pam, @pb50, It's easy to doubt treatment decisions after the fact, but we never really know what else may have happened without the lobectomy too. We make the best decisions that we can with the information that we have at the time. It's all a learning experience, and you've been so very helpful in guiding others on Connect to ask the right questions. Thank you for that.
It sounds like the RA certainly complicates things, but I'm glad you are finding some relief, even if it's temporary. It sounds like you've tried steroids before, so you somewhat know what you're up against, and when it's too much. I hope the flare calms down for you soon, and I'm glad you pulled your rheumatologist in too!

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Thanks - I needed that. I worked in Banking in an area of regulatory performance where acceptable error was virtually zero. So I have challenges expecting less in my own life - as I’m sure my children would affirm 🙂

My Rheumatologist is really more like my primary because until this lung cancer, RA sat at the top of my risk list. But it was pure chance that I learned that Prednisone mitigates Rib and Diaphragm pain. That’s big to me. It tells me that eventually it could resolve or that other meds less dangerous over time than steroids could help manage it.

The scarring/fibrosis associated with the lobectomy is an ‘is’. Disappointing but … I think I only see effects of that with exertion.

But thanks again for support and the virtual forehead thump. 😜

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@pb50

Thanks - I needed that. I worked in Banking in an area of regulatory performance where acceptable error was virtually zero. So I have challenges expecting less in my own life - as I’m sure my children would affirm 🙂

My Rheumatologist is really more like my primary because until this lung cancer, RA sat at the top of my risk list. But it was pure chance that I learned that Prednisone mitigates Rib and Diaphragm pain. That’s big to me. It tells me that eventually it could resolve or that other meds less dangerous over time than steroids could help manage it.

The scarring/fibrosis associated with the lobectomy is an ‘is’. Disappointing but … I think I only see effects of that with exertion.

But thanks again for support and the virtual forehead thump. 😜

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I too complained of rib & diaphram pain for a couple years post op & all I got was oh sometimes that happens after a lobectomy with no offer of diagnosing & treating it. It almost always happens when I bent over from a sitting position. Now I know what it is & how it could be treated. I am happy for the knowledge but disappointed that none of my doctors told me that.

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@mef

I too complained of rib & diaphram pain for a couple years post op & all I got was oh sometimes that happens after a lobectomy with no offer of diagnosing & treating it. It almost always happens when I bent over from a sitting position. Now I know what it is & how it could be treated. I am happy for the knowledge but disappointed that none of my doctors told me that.

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What did you learn?

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@mef

I too complained of rib & diaphram pain for a couple years post op & all I got was oh sometimes that happens after a lobectomy with no offer of diagnosing & treating it. It almost always happens when I bent over from a sitting position. Now I know what it is & how it could be treated. I am happy for the knowledge but disappointed that none of my doctors told me that.

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@mef
When You say “Now I know what it is & how it could be treated”, can you share what you mean?

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@pb50

@mef
When You say “Now I know what it is & how it could be treated”, can you share what you mean?

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I learned that others experienced the same pain that I did with rib’s & diaphragm. Also that steroids & other treatments are effective.

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@mef

I learned that others experienced the same pain that I did with rib’s & diaphragm. Also that steroids & other treatments are effective.

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Ah. I’m happy to have gotten a few days relief while on prednisone for an RA flare. I had no idea that was an option, but of course I can’t take steroids long term. So it’s a short term gift but I’ll take it.

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@pb50

Thanks - I needed that. I worked in Banking in an area of regulatory performance where acceptable error was virtually zero. So I have challenges expecting less in my own life - as I’m sure my children would affirm 🙂

My Rheumatologist is really more like my primary because until this lung cancer, RA sat at the top of my risk list. But it was pure chance that I learned that Prednisone mitigates Rib and Diaphragm pain. That’s big to me. It tells me that eventually it could resolve or that other meds less dangerous over time than steroids could help manage it.

The scarring/fibrosis associated with the lobectomy is an ‘is’. Disappointing but … I think I only see effects of that with exertion.

But thanks again for support and the virtual forehead thump. 😜

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Your comments are interesting. I had VAT surgery, so they push instruments between ribs and that interrupts the nerves. In fact, I had fractured rib. My nerve pain is gone (6 months), but I feel stiffness and hardness when I take significant breath and a numbness like a belt under the breast. I am currently on Prednisone (40mg for 2 weeks, then 30mg, 20mg for total of 6 weeks) and it has not taken those sensations away. It does help me to breath for suspected alveolitis (am learning to spell/misspell lots of words now)
Prednisone of course lowers immune system response so need to be cautious to avoid contagious disseizes and also in a few months it can significantly impact bone density.

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@vic83

Your comments are interesting. I had VAT surgery, so they push instruments between ribs and that interrupts the nerves. In fact, I had fractured rib. My nerve pain is gone (6 months), but I feel stiffness and hardness when I take significant breath and a numbness like a belt under the breast. I am currently on Prednisone (40mg for 2 weeks, then 30mg, 20mg for total of 6 weeks) and it has not taken those sensations away. It does help me to breath for suspected alveolitis (am learning to spell/misspell lots of words now)
Prednisone of course lowers immune system response so need to be cautious to avoid contagious disseizes and also in a few months it can significantly impact bone density.

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Yea. It was completely an unexpected benefit since I was taking the prednisone for an RA flare. I already have infusions every six weeks of a biologic immunosuppressant (Remicade) for my RA, so I can’t stay on Prednisone long. I took 20mg for the first 4 days and I’m stepping down now. The benefit on my rib/diaphragm has worn off by end of day each day and now that I’m stepping dosage down, it’s not that much relief even in morning. But those first Four days were awesome!!!

Maybe I don’t know what I’m talking About , but if prednisone helps,’it must be inflammation. So sooner or later that has to resolve. A girl can hope .

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Well pulmonologist says of course I have scarring - They had to cut pleura to get to lobe they removed.

Says sometimes they bruise ribs getting instruments in etc.

Improvement from Prednisone for unrelated condition suggests neuromuscular inflammation (normal Sed rate notwithstanding)

You know, it could be RA related.
(When in doubt blame it on RA)

Let’s see how you are In four months.

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@pb50

Well pulmonologist says of course I have scarring - They had to cut pleura to get to lobe they removed.

Says sometimes they bruise ribs getting instruments in etc.

Improvement from Prednisone for unrelated condition suggests neuromuscular inflammation (normal Sed rate notwithstanding)

You know, it could be RA related.
(When in doubt blame it on RA)

Let’s see how you are In four months.

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@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). 🙂

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