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harleymama
@harleymama

Posts: 13
Joined: May 22, 2018

Chronic pain after partial nephrectomy and UPJ reconstruction?

Posted by @harleymama, Oct 26, 2018

I've had chronic pain (possibly referred) in my back, hips, and thighs after a partial nephrectomy and a UPJ reconstruction. Has anyone else had this? The physical therapist thinks I have scarring that is tethering some nerves.

REPLY

Hi @harleymama, I see that @therberger wrote about UPJ obstruction in this discussion:
> UPJ obstruction – horseshoe kidney / partial nephrectomy https://connect.mayoclinic.org/discussion/upj-obstruction-horseshoe-kidney-partial-nephrectomy/

With any luck @therberger will return to tell us about the results of his appointment looking into fixing the scar tissue growth.

@harleymama, have you investigated what might be done about the scarring? What options are there?

@colleenyoung

Hi @harleymama, I see that @therberger wrote about UPJ obstruction in this discussion:
> UPJ obstruction – horseshoe kidney / partial nephrectomy https://connect.mayoclinic.org/discussion/upj-obstruction-horseshoe-kidney-partial-nephrectomy/

With any luck @therberger will return to tell us about the results of his appointment looking into fixing the scar tissue growth.

@harleymama, have you investigated what might be done about the scarring? What options are there?

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Right now I'm receiving myofascial release for the scar tissue. I don't know about other options, that's why I posted. I've also sought input from the urologist that performed my surgeries. I haven't heard back from him yet.

I had ureterscopy ended up with pinched nerve in the L5 – S2 joint

My urologist said it's possible that I have nerve tethering because they cut through a lot of tissue. No suggestions for diagnostics or treatment (not very helpful). I have had 5 sessions of myofascial release therapy and the stabbing pain in my left thigh is gone today!!! Before I had PT, I walked on the treadmill for 30 minutes to see what else was different. Nothing was changed on the right but on the left I only had two spots that were painful. One behind my knee and one by my hip. I had a very experienced physical therapist see me for a 1:1 consult today. He did see me at one other time when my therapist pulled him in to look at me. He's the one that suggested I may have scarring around my kidney and my therapist should focus on fascial release. That's when I took that information and ran with it. Today, as I laid on the table face up, he placed one hand under my back and one on my abdomen. He closed his eyes and just carried on a conversation with me about what I've been doing since I saw him last and why I was moving differently than when I first saw him. His scribe whispered What are you doing? He said he was feeling how my liver and kidney moved with my breathing. He said there's a definite lag between the two. Then had me flip over and he examined my back, hips and legs. My fascia is tight over my kidney on the right side, down my back, across my hip and into the front of my leg. (Right where my pain is) And he then proceeded to pinpoint the areas on my left leg that still had pain!! I said where have you been the last three years and why wasn't this diagnosed earlier before it snow balled out of control. His response: Because doctors don't lay hands on their patients today like they need to. He said I can be cured without further surgery. Hallelujah!!!!

@treglaser I've been throwing money at my problem for 3 years. It's so frustrating. I've been through orthopedics (hip labral repair, and gluteus medius tear repair), my PCP, Pain/Spine clinic, four different physical therapy practices, a surgeon that works for the MN Vikings football team for a second opinion, a spine specialist in a different practice for a second opinion, regenerative medicine doctor (stem cell transplant), three different massage therapists, two chiropractors, etc. You know what I'm talking about. I've been diagnosed with labral tears (one side repaired), gluteus medius tear (repaired), bulging disc, mild foraminal spinal stenosis, sacroiliac joint dysfunction, sacral pain, and myofascial pain disorder. Now that I know my road to recovery, I will pursue it. With that being said, I will tell you that my myofascial release therapist says that a lot of her patients have fibromyalgia, and find relief (not a cure). Just wanted you to know my cure and journey and to encourage you to pursue relief. And also, all massage therapists are not the same. If you pursue myofascial release, make sure they are John Barnes trained or something similar.

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