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Avatar universal

Has anyone found treatment for phantom pain after kidney removal?

I have had both of my kidneys auto-transplanted back into me. Basically my kidneys were fine, but my ureter tubes were not so after numerous "cut & splice" surgeries, I finally found a doctor who could end that cycle. They removed the ureter tubes and attached my kidneys directly to my bladder. I had my right one auto-transplanted in 1994 and my left one in 2001. After that I thought my pain would be over. It was fine until about 8 years later when I started having phantom pains right where my left kidney used to be. I consulted my transplant surgeon who said that there is a small percentage of patients who experience pain after kidney removal, so he sent me to the pain clinic.

Most days it still feels like my kidney is still there and hurts exactly like it did when I had kidney infections or kidney stones. When I had my surgery they cut me from back ribcage to the front below my bladder so there is a lot of nerves that were severed during the surgery. Most of the time if feels like my kidney is huge and taking up too much space inside and under my ribcage, so the pain is not just right in the nerve endings.

Through pain management doctors I have learned to cope by using Fentanyl patches for the major pain and Percocet for what the doctors call "breakthrough" pain. Even with both of these pain remedies, I still have daily pain in the 5+ range and often into the 7-8 range. It greatly effects my daily life. I guess I should feel lucky that I only have phantom pain on one side, not both. :-)

The pain clinics have tried nerve blocks, etc. to no avail. They have ruled out scar tissue buildup and all of the usual issues that are the result of surgical incisions. They put me on Lyrica and its only effect was to make me gain 50 pounds.

I would appreciate any kind of a treatment that has worked for others who may suffer from the same type of phantom pain from having a kidney removed.
2 Responses
547368 tn?1440541785
Hello Kimz, Welcome to our Pain Management Community. I am sorry to hear about your phantom pain. My heart goes out to you!

Phantom Pain can be very difficult to successfully treat and/or manage. Most of the Phantom Pain I've seen has been due to the loss of a limb. We haven't had many concerns or questions regarding Phantom Pain in our Forum.  

First let me provide you with a link to our Kidney Forum.
You are always welcome here. Please don't leave our forum.  I'm just wondering if the Kidney Forum may have more or additional information for you.

It sounds like you've done all the usual and customary things searching for an answer to your pain. I suggest that you consult another PM Clinic - or another Urologist. I've found Clinics and Physicians associated with a large teaching hospital to be on the cutting edge of medicine. If you haven't been to one it's worth a try. If you have been or are being cared for by a large teaching facility - than a consult with one of our nationally known clinics may prove beneficial. Again, worth consideration.

All the literate says hoe challenging Phantom Pain is to manage. It's a trial and error process. There are a variety of medications. When one isn't effective another, often in the same family can be tried. It can be a long process.  Maybe you've been down that road. If so - sorry - I have no way of knowing your history.

Have they tried a TENS Unit? Sometimes the electrical impulses can disrupt the pain signals.

Acupuncture is often used in Chronic Pain with varying degrees of effectiveness. It may be worth a try.

There are newer treatments often utilized in treatment - such as a SCS (Spinal Cord Stimulator) or Deep Brain Stimulation. If these options have not been discussed it may behoove you to seek another opinion. Physician's willing to think outside the box may provide you with some answers.    

I hope something I have offered will be of help. One of our members may offer more suggestions. Please keep in touch and let us know how you are doing. We know Chronic Pain and how it disrupts our lives. I'll look forward to hearing from you again soon.

Take Care,
Avatar universal
Fentanyl does not work for some people, me included. You may need something else, perhaps extended release morphine. There are other drugs for neuropathy such as neurontin and topamax. wt gain may be associated with neurontin but topamax patients often see a reduced or atleast stable weight. A heatpad or (hot bath) to the area usually helps as much or more than percocet for breakthough pain. In combination it definitely helps. Have you had a vit D check? Sometimes this can cause quite a bit of pain if it is low

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