Had lobectomy in 2020 still having radiating severe nerve pain.

Drats. I have three incisions but the largest is maybe 3”. And the pain on deep breaths has improved since the first few weeks, but s - l - o - w -l - y.

Smaller incisions should be easier to manage nerve pain wise.

I agree. And this isn’t the nerve pain I had soon after surgery. This is more vise grip like restriction

Order from surgeon is to have a screening CT every 6 mos for 5 years. So I’m getting first one today - but Pulmonologist upgraded it to a diagnostic reason and ordered a 3D MIPS -
I need to research what that actually means, but intent is to see if radiologist has any observations re diaphragm restriction… probably not likely and then I guess I’ll just go sit in my corner and pout. 🙄

You should report that to your doctor.

I did. I had a thoracic CT today primarily as my first of 5 yrs of lung monitoring, but that should afford the Radiologist the ability to comment on any observed bony anomalies.

Well I received the readout of my CT. Good news is no new lung modules. But I didn’t expect one. The part I didn’t understand says

Lungs/Pleura: Centrilobular and paraseptal emphysema. Left lower lobectomy with associated pleuroparenchymal scarring in the left hemithorax. No suspicious pulmonary nodules. No pleural fluid.

So I have a message out to pulmonologist asking whether the pleuroparenchymal scarring could be contributing to this vice grip I feel in my ribs and diaphragm when I try to take a deep breath.

Hi Pam, @pb50, I’m glad you reached out to the pulmonologist. It’s difficult to interpret the reports, but that scaring could be a contributing factor. Hopefully they will be able to give you an idea on what to expect going forward, like will that break down as time goes on?
I hadn’t had a chance to get back to your MIPs question, by now you know that the scan is the same as a standard CT from the patient perspective. It allows a more detailed image and is often used for lung scans. All of my CTs are ‘with MIPs’ (Maximum intensity projection).
I’m glad there were no new nodules found!

I’ve learned a bit too. Yes, 3D/MIPS = biz as usual for lung screening at least.

I have also learned that scarring = fibrosis. And this variety is a documented possible outcome of lobectomy. No real treatment.

Good learnings include fact that this variety of pulmonary fibrosis is focal and less likely to progress compared to idiopathic variety.

Still irritates the heck out of me that the diagnosis of potential malignancy triggered a “get it out, get it over with” mentality, and consequently I did no comparative research on treatment options, and thus failed to learn a pre-surgical consult with oncology was advised. Knowing now that a 1.4cm nodule could have been zapped with radiation or removed in a wedge rather than full lobectomy leaves me feeling regretful and outright stupid.

So here’s the bit of serendipity. I also have RA and have been in what’s known as a Flare for a couple of weeks. That’s when my symptoms of pain and swelling inexplicably move from ‘well controlled’ to ‘what the hell’, with increased pain, lots of swelling, etc. Yesterday my Rheumatologist talked me into a course of low dose prednisone (I turn into a banshee at normal dosage). So I took with breakfast and within four hours my rib pain on deep breaths is 80% GONE!! Wow!!! So at least some of the pain and diaphragm expansion isnt only physical restriction from fibrosis. It’s treatable! Well it would have to be reserved for important occasions when I need/want to feel kind of normal because you can’t live on a steady diet of steroids. But I can have some relief some of the time. 😀

So I’ve met the enemy and it is me, so I will take this glimmer of up side.

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!