Chronic pain after partial nephrectomy and UPJ reconstruction?

Posted by harleymama @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.

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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@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.

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

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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!!!!

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@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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Hello Everyone,

I've been dealing with a strange issue that I cannot seem to get to the bottom of. I've seen general doctors, urologists and gastroenterologists to no avail. I had a very minor UPJ obstruction on my left kidney which the urologist suggested was causing the issue (found via CT scan.) I had a pyeloplasty procedure done to correct it but it hasnt alleviated any of my symptoms, so now I'm really desperate.

Back in September 2018 I woke up with soreness on both sides of my lower back, which lingered for a few weeks and my doctor and I wrote it off to maybe being a muscle strain issue. This soreness then because a dull pain that moved to my flank/both sides of my body. I also started having flares of minor pain on my sides, hips, and abdomen areas. Along with this, my left testicle felt out of place and was riding much higher than normal. I am also feeling a tingling sensation in my scrotum, similar to the retraction sensation felt in cold weather.

CT scan revealed only the minor UPJ obstruction and ultrasound of testicles did not show any issues.

All of these symptoms seemed to have started soon after I quit heavy marijuana concentrate use and chewing tobacco. (About 7 years of daily use for each)

Any responses from anyone who has ever experienced an issue similar to this would be appreciated!

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Hi @sufferingchris and welcome to Connect. You may have noticed I moved your post to this existing discussion on UPJ obstructions so that you can connect with others who may have experienced similar problems. Simply click VIEW & REPLY in your email notification to be brought to your post.

It must be demoralizing to be unsuccessful in finding a solution to these symptoms.

I am tagging @harleymama as she has had UPJ obstruction and may be able to offer you support.

Back to you @sufferingchris Is there anything you can do that relieves the pain?

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@ethanmcconkey

Hi @sufferingchris and welcome to Connect. You may have noticed I moved your post to this existing discussion on UPJ obstructions so that you can connect with others who may have experienced similar problems. Simply click VIEW & REPLY in your email notification to be brought to your post.

It must be demoralizing to be unsuccessful in finding a solution to these symptoms.

I am tagging @harleymama as she has had UPJ obstruction and may be able to offer you support.

Back to you @sufferingchris Is there anything you can do that relieves the pain?

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Hi Ethan, thanks for moving this to the correct spot. There isn't much I can do to relieve the pain. Ibuprofen 800mg helps a little, but the mild pain is still present. Warm showers help. The pain is bearable, but it consistently flares up and is taking a toll on me mentally. The testicle issue is also very difficult to deal with, as they just don't feel normal. I'm hoping these issues resolve themselves.

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Hello, I am new to MC Connect and this discussion. Can anybody tell me what it is like after pyeloplasty surgery? I am scheduled for surgery next week. Thanks

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Hi @pmwilson, and welcome to Connect. @sufferingchris has had pyeloplasty surgery and can hopefully share experiences with you to help you prepare for your surgery next week.

It seems that pyeloplasty is an efficient procedure for treating UPJ obstruction in adults. Here is a recent journal article about the procedure:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5485285/

Wilson, we look forward to getting to know more about you. What led to your needing pyeloplasty surgery? Will it be done laparoscopically?

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@colleenyoung

Hi @pmwilson, and welcome to Connect. @sufferingchris has had pyeloplasty surgery and can hopefully share experiences with you to help you prepare for your surgery next week.

It seems that pyeloplasty is an efficient procedure for treating UPJ obstruction in adults. Here is a recent journal article about the procedure:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5485285/

Wilson, we look forward to getting to know more about you. What led to your needing pyeloplasty surgery? Will it be done laparoscopically?

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Thank you for the information. Robotic pyeloplasty has been recommended to treat hydronephrosis caused by a blood vessel blocking the flow of urine from my right kidney. A stent was inserted and the surgery is to provide a long term solution. I am concerned about the measured 22% function in my right kidney and hope to see it improve.

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@pmwilson

Thank you for the information. Robotic pyeloplasty has been recommended to treat hydronephrosis caused by a blood vessel blocking the flow of urine from my right kidney. A stent was inserted and the surgery is to provide a long term solution. I am concerned about the measured 22% function in my right kidney and hope to see it improve.

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@pmwilson, I wanted to check in. Has the function of your right kidney improved since we last corresponded?

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@colleenyoung

@pmwilson, I wanted to check in. Has the function of your right kidney improved since we last corresponded?

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Status of kidney is unknown at this time. I should know more in a month. Thanks for asking.

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