"Ghost Pain" Associated with Organ Removal

[el_em_en_oh]

Calling all PM-Forum Members!

Hopefully, ONE of you has some insight or experience or knows someone that knows someone that knows someone, and can help me with the question I'm about to ask...

After years and years of countless thousands of kidney-stones, 100's of procedures (both invasive & non), many thousands of CT's, X-Rays, KUB's, Nuclear-Medicine Tests, etc, etc... my urologist has finally stepped up and offered me a left-side Nephrectomy (kidney removal). It's a radical solution to my problem, but if my body reacts the way he thinks it's going to react, I'll not have a kidney-stone problem any more, as I won't have a kidney for the stones to form in. Problem solved, right?

*****

Lead-In, to my question:
I currently have chronic-pain associated with my history of stones, and renal-cysts & lesions, the multiple 'cutting surgeries' I've had on my left-side kidney, etc, etc, the list goes on as to WHY I have the pain that I have. My pain-level, on any given day, is between a 5 and a 7 (on some days it's lower, but the "norm" is a 5), and I just "deal with it". As I'm in 'recovery' (as most of the regulars know) and am not able to just keep narcotics hanging around as I'd just gobble them up, I'll do pretty much anything at this point to get rid of this pain (not to mention getting rid of my need to constantly go to the hospital).

Question:
Once my kidney is removed, am I likely to experience 'ghost pain'? Has anyone here ever had an organ removed and experienced this? Or do you know someone that's experienced this?

*****

I've been doing a little reading on the interwebs, and from what I've read, I'm almost assuredly going to still experience the same level of pain as if the kidney was still there, only there won't be anything in there to cause the pain. Some call it a 'Phantom', some call it a 'Ghost', but I think you guys know what I'm getting at.

Any & all feedback would be appreciated.

Thanks in advance Brother & Sisters!

LMNO

[Britmick2001]

I have Polycystic kidney disease and my kidneys are the size of two nfl footballs, completely covered in cysts dime size to plum size. Just moving wrong can cause the cysts to rupture which causes unbearable pain for a day. I suffer chronic pain myself and live with a pain level of a 7 daily, sometimes a 9. I also am a dialysis patient as well which pain is caused to my arm when they use 15 gauge needles to stick me. I had pain so bad in my left kidney and suffered for years like that until my dr suggested me getting my kidney removed. I was on dialysis so it honestly didn't matter if I lost one. I had this surgery almost a year ago and to this day, as I'm writing this I suffer from phamtom pains. The pain is not an all the time thing, but I do feel pain there like I used to when my kidney was there. By no means it's no where comparable to what it was before, but it's more than enough to make me miserable. I don't feel this all the time, just every once in a blue moon as they would say. With my short story said, it was still better for me to get my kidney removed, dealing with phamtom or ghost pain is not as bad as you may have heard it to be and trust I've had my fair share of surgeries pain and days I can't do a thing because of not being able to move the pain being so intense. This pain is at least bearable, something I'm sure you can deal with especially since your used to high pain levels. Not sure how long this has been posted I was researching phamtom pain and seen your question and wanted to answer you seeing that I live that life your asking about. I say good luck for your surgery if you decide to go through it, and believe after your healed you should be ok. Have a great day! Jennifer

[Tuckamore]

Hello Evilanne,

This is a very old thread. Normally I'd ask you to begin a new thread - but luckily the originally poster is still active in MedHelp. Indeed she has become a real asset to our site.

I hope she'll respond on this thread so we may hear how she is doing - and what decision she ended up making. If she doesn't reply click on her name and it will take you to her Profile Page. You may leave a note or send her a private message.

We appreciate your comment and information. Thanks so much.

~Tuck

[evilanne]

I believe my mother has daily phantom pain since removal of her gallbladder over 2 years ago.  Someone found something on the Mayo Clinic sight that indicated that acupuncture may be helpful but I am still trying to find that or anything else that may be helpful.  

[BetsyE]

I had my left kidney removed in April, 2003 and am STILL feeling phantom pain 11 years later... Whenever I am stressed or run down, I get that dull ache in my back that I used to get when I had a kidney infection. Sadly, I think this is going to continue indefinitely...

[Renie62]

I lost A kidney to thrombosis and regularly feel the same pain. My nephrologist says many of his patients who've lost kidneys experience this, so I suppose it can't be too unusual.

[donluisjr]

I had my kidney removed 6yrs ago and now im feelin the pain again 2dys in a row is this phantom pain and im tripping out or is this discomfort the begining of something else ?nmthe pain is in the sam exact location feeling it from the front to the back of where my kidney was

[Weffette]

Phantom pain is a reality to those that have lost limbs...a friend lost his leg in an accident...he still feels it itch, hurt and move...as the nerves to the stump "think" they continue to the foot.
As far as phantom pains in your kidney...you could be experiencing real pain from adhesions and scar tissue.  Request an ultra sound or other diagnostics to determine if this is the case.
I wish you luck...

[Tuckamore]

Hi LMNO,

No I haven't had a kidney removed... However when I had my MVA there were 5 physicians that said my right one must be removed... Long story short ONE surgeon said he could repair the ureter and said I was much too young to live my life with one kidney... as anything could go wrong with the other. So after seven long hours of surgery he successfully repaired the ureter. Even WITH the kidney I have pain from the ureter repair, adhesions, etc.

I am very familiar with Phantom Pain but believe it mostly applies to missing limbs, fingers, toes, that short of thing. I have never heard it applied to organs. I know a person with one kidney, another with one lung and neither have Phantom Pain. That's not saying it can't happen... and I haven't researched it.  

I don't know your age... but it seems pretty drastic to me. You're certainly approaching it correctly. Weight all the odds... research, research and ask questions, ask questions, ask questions.

If you pain level is tolerable I think you have a difficult decision. However if the pain is destroying you... and or your life the decision would be a bit easier. There are no guarantees as I am sure you know. You're faced with a huge decision and my heart goes out to you.

I assume you have posted on the urology forum? If not it's worth a try. Best of luck whatever you decide... and as always keep us updated.

Your sister in pain,
~Tuck