UPJ obstruction - horseshoe kidney / partial nephrectomy
Hello! I was born with a horseshoe kidney. Diagnosed at 3 years with wilms tumor. Had partial nephrectomy (removed left side). In 2001 my kidney shut down, they did a procedure saying I had scar tissue build up. Everything was fine until 2016 when it shut down again. This time they thought I had stones and placed a ureteral stent. Pulled it 1 month later and was back in the ER with my kidney shutting down again within days. It's been determined that my ureter is coming over a mass from where my kidneys were joined and it's clamping itself off. Luckily I have an apt with Mayo in May to hopefully fix this. Anyone else have this issue?
Interested in more discussions like this? Go to the Kidney & Bladder Support Group.
My sincere apologies for the tardy response, but I'd like to extend a warm welcome to Connect. While I couldn't find members with the same condition, I'd like to introduce you to @contentandwell @IWantToBelieve and Mentor @rosemarya, who is a simultaneous kidney/liver transplant recipient; I'm confident they will have something to add to this discussion.
I’d also like to introduce you to a few others who can share their experiences about living with one kidney; please meet @foxylady @tntredhead @trishanna @charlie1947.
Here's some additional information about ureteral obstruction from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/ureteral-obstruction/symptoms-causes/syc-20354676
@therberger, it seems that pyeloplasty is an efficient procedure for treating UPJ obstruction in adults. Here is a recent journal article about the procedure:
May I ask if you've been seen at Mayo Clinic?
@therberger, I am not familiar with the condition that you describe. I do, however, live (very well) with my transplanted kidney. I needed a kidney transplant due to acute kidney failure, a complication of my liver failure. I transplanted at Mayo and I am continuously amazed at the level of care that the specialists provide. They monitor the condition of my kidney and they make sure that I understand what is going on.
I can assure you that you will be in good hands. And also, take your questions and they will take the time to give you explanations and answers .
I hope that you can learn a resolution to this condition.
Let me know if there is anything that I can assist with, Do you need travel information to Mayo? -We have a Visiting Mayo Discussion that can be helpful, We welcome questions. https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/
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?
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 intermittent hydronephrosis due to UPJ obstruction. My symptoms were debilitating flank pain with nausea and vomitting and bloody urine. It would only last a few hours mid day. They first thought I had passed a stone (which I don't have). Mine was caused by the renal artery and vein being on the wrong side of the ureter. The increased blood pressure from working on my feet crimped the ureter. I've had stents. I don't which was worse, intermittent flank pain, or the stent that prevented the flank pain but caused the sensation that I was urinating broken glass. I also had an incidental AML (angiomyolipoma) that was big enough I could have bled to death. So I had a partial nephrectomy for the tumor and then 6 months later (after the cause was identified) had the UPJ reconstruction by Dr. Chow in Rochester. Since the surgeries, I've developed intraabdominal scar tissue that tethers nerves causing pain in my low back/sacrum, hips, and upper legs. I also get intermittent pins and needles in my lower legs. I can't stand for any length of time or sit for too long before I'm extremely uncomfortable. I asked for Dr. Chow's input on this but haven't heard back yet. I've been getting treatment for three years now with therapy, etc., without success. Right now I've had two sessions of myofascial release. It's too soon to know if that will help, but I'm willing to try anything. Until I had the UPJ reconstruction, I was showing decreased kidney function on that side but that reversed. It took about 9 months from the time I first had symptoms until a cause was identified and corrected.
Also, my recommendation, call the clinic daily to check for cancellations so you can get in earlier. May is a long time to wait when your renal health is in jeopardy.
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.