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3 Years post op, severe neuropathy, intense pain. Anyone else?

Nandra
Posts: 2
Joined: Jan 2009

Hi there. I'm new here, but have a question. I'm 26 years old and am 3 years post op. I had a full right nephrectomy after being diagnosed with Renal Cell Carcinoma ( kidney cancer ). I am still in constant pain. The doctors say that it's because all of the nerves in my abdomen were cut during surgery, and in hopes of finding the other end of the nerve, they send out constant pain signals. None of the nerve blockers have worked, and am currently taking a slew of pain medication to be functional. Has anyone else had this or a similar problem??? Thanks!

Nicole

jo
Posts: 1
Joined: Jan 2009

I also had a nephrectomy back in feb. of 05. I did 3 different types of treatment after sugery that lasted 2 1/2 years for mets to the liver and lungs. Now that all they think I have are scars from the cancer I am off all treatment and have been for 1 1/2 years. But I had severe pain in my chest after the treatment. They tested me for every thing they could think of but couldn't find anything wrong. My general Doctor tried me on a dose of nortriptyline 2-25 mg pills at bedtime. It somehow takes all my pain away, which they think must be neuropathy. Nortriptyline is a anti depressent but in small doses is used for chronic pain. I sure am happy that I went to this Doctor. Just a idea for you and I know one med. might work for some people and might not work on others. Good Luck.

DAVE2001
Posts: 1
Joined: Jan 2009

Hello Nicole
I had a nephrectomy in September 2001. Since then I have suffered post operational pain, particularly in the precise area of the section of removed rib, done to facilitate to remove my left kidney. I attended a pain clinic for 4 years having numerous treatments, including Axain cream, Gabapentin, Amitriptyline,and intercostal nerve block injections. None of these treatments had any effect. As a last resort I asked about using a TENS machine.[trans cutaneous electronic nerve stimulation]. I was given the use of one for 6 months,til I purchased one for myself, and it provided some relief, in fact I wear this whenever I go out and have worn it during periods of hospitalization when I had pancreatitis.
I have to say that it is only of marginal benefit. Sometimes the pain is quite bad and is agravated by stress and general illness such as colds and flu.
I am now in the process of consulting my GP with view to possible surgery. In my case my problem so far has been based on the assumption that it is nerve damage, post operational.
I have got to the stage where I need to know exactly what is causing the problem and what the medical professionals can offer me here in the UK.
One word of encouragement is don't be disheartened by my tale of misfortune. Go see your doctor and be persistant. Mention the treatments I have noted, but in the meantime you may get some relief by getting your own TENS unit, but get instruction on it's correct use first.
If anyone out there, doctors or patients, who can offer any further advise I would be most grateful to hear from you.However, if I manage to progress with curing my problem in the near future I will certainly let you know. I have recently learned of research being carried out at Manchester University here in the UK, into nerve damage treatment. After e-mailing them I got a reply to say that it could be another 5 years before any procedures are available, even then I would have to be considered suitable for treatment. I live in hope.
Best regards David.

KCFighter's picture
KCFighter
Posts: 50
Joined: Jan 2006

Nicole,

Sorry to hear of your pain but the good news is that it sounds like you are still cancer free after 3 years so congratulations on that. I had my right kidney removed laparoscopically almost 3 years ago too.

Within a month after my surgery, I had a few, severe pains that felt like something had snapped. But it was a pain so bad that I nearly passed out but thankfully it subsided pretty fast. Since then, I occassionally have pain, especially where my kidney used to be but it is mild. Since you talk about the abdomen pain, it sounds like you had traditional surgery. I wouldn't think that you should still be having this amount of pain so long after surgery. In addition to my nephrectomy, I've had 3 other abdominal surgeries for fibroid removal & an eventual hysterectomy because one of the fibroid tumors was found to have mytotic cells. I have a c-section scar which was reused when they removed my kidney making it 4 times that my poor stomach has been opened. It is mostly numb along that incision area but can be sensitive. I'm sorry I don't have a solution to offer but wanted to let you know that numbness, pain, and tenderness is probably normal. But, if the pain is bad, it may be worth seeking a 2nd opinion or go to a doc that specializes in pain management (if you haven't already). Good luck.

Johan
Posts: 1
Joined: Mar 2009

I am experiencing the same symptoms as you after renal cell carcinoma and as to date no remedy for it. None of the nerve blockers worked. If you have any success in obtaining a cute or something to relief the pain, it will be appreciated

cathyK's picture
cathyK
Posts: 88
Joined: Jul 2009

hi Nicole,
sorry to hear of your pain,
I am not sure if this will help or not but here goes
I had endometrial cancer full historectomy, abdomen cut wide open, after had pain in abdomen , at times extreme , couldnt wear anything that would rub my belly.
had a slew of pain pills and doc saying it was all in my mind, he couldnt find anything, got rid of that gyn oncologist , for that and many other reasons, got second doc, she said well we could give you this pill, I showed her the 7 pills I had already tried, she said WOW I would have done something else much sooner than this! and said try phisical therapy, they massaged the area, muscles were hard as a rock, lots of pain getting to this point, but now only once in a while the pain gets bad, the last option my doc said would have been pain management ,
not sure if this will help but I have seen many come in to phisical therapy in extreme pain and seen wonders happen!
just a suggestion .
hope it helps

cathy k

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

First, I'm glad that you're currently tumor free! That's FABULOUS! As for the nerve pain, I had a lot of that as well and tried a number of things. My doctor finally prescribed 'lidocaine patches'. You wear one for no more than 12 hours - and I did experience some relief from the nerve pain. It might be an option for you.

Chef T
Posts: 1
Joined: Mar 2011

Hi Nandra, I know this posting is like a year late, but I wanted to tell you that my husband experienced the exact same symptoms you were experiencing s/p left nephrectomy. The doctors said it was nerve damage and that they were trying to find the ends of nerves to reconnect and were misfiring. My husband's pain was so intense and constant that we had to do something more. I found the chief of neurosurgery at Mt. Sinai in New York and he said he could reopen the excision, find the nerves that have been cut and tie each of them off (in a knot) so they will not fire any longer, essentially killing them. We went for it and my husband does not experience that pain any more, the surgery was a success. He does however have extraordinary pain unrelated to the nerve pain though. For your information the neurosurgeon called this phenomenon a neuroma.

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