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problems after nephrectomy...anyone else have this?

hannah814
Posts: 8
Joined: Jul 2005

Hi! I had a full nephrectomy 5 months ago and I am still severly swollen on that side. I am numb (feels like when your hand goes to sleep) from my hip to 1/2 way down my thigh all the way over to my groin area. This is all the time... I have not had feeling since my surgery. I have sharp stabbing pains all the time in this area. I have swollen lyphm nodes all over my body. Anyone else have any of these things? If so how long before you were back to normal? I can take pain.... I was even discharged from the hospital without pain meds because I did not take any while I was in there after the surgery. But, I do not know how much longer I can go with this feeling. I always slept on my left side and now I can not. Any type of pressure (even from my jeans) causes pain over the numbness. Please HELP!

abestbarbara's picture
abestbarbara
Posts: 18
Joined: Aug 2005

Hi. I had the numbness also. It lasted about 6 months, I think. I had a bulge that I worried about, but if you read this site, you will see it is common. I used to sleep on my right side but now I can't. I have CT scans every 3 months. Hope all goes well.

urkabsd
Posts: 37
Joined: Jul 2005

hi, hannah,
i also had the exact same thing, i am coming up on my 12 month mark and still have no feeling in that same area, i can however sleep on that side now, it just feels very peculiar. weren't you the lady that had a nephrectomy that wasn't needed? i had the weird pains and tinglings for 6 months and even after that if i lifted something heavy or overdid it in any way. everyone is different. i saw several e-mails from people who were back to work in 3 weeks with no pain etc. at first it made me paranoid, but everybody's situation is different.

hannah814
Posts: 8
Joined: Jul 2005

Hi! Yes I'm the lady that had the nephrectomy that did not need it. I'm just worried that something else is going on.... the numbness is getting worse not better and the side pain that I had that started all of this is back just as bad as it was when I had my kidney. The "bulge" is getting bigger too. Guess I dont understand why. I was hoping to chat with some people who has went through this and can give me some insight. Because, needless to say, I'm afraid to go to the Doctor.... I'm afraid they will tell me I have cancer some place else. I did have a biopsy on several lymph nodes in December because I have them enlarged all over my body. Which came back OK. But I'm not sure I can handle hearing the big "C" again for awhile... I was told cancer 2 times in 6 months (rcc & lymphoma) which turned out not to be....THANK GOD! Well, thanks for all your help and sharing your experience with me.

urkabsd
Posts: 37
Joined: Jul 2005

hannah, check out the kidney cancer site at http://cancerguide.org/kofaq/ it is great

thebulge
Posts: 1
Joined: Jul 2010

I am also a lady who had the partial nephrectomy who did not need it. Turns out it was an oncocytoma, rarely cancerous. My problem now is the BULGE! I had the surgery in 2006 and every year this bulge is getting larger. Like a few people have said, it is not too bad in the morning and it grows steadily thoughtout the day. It is severely disabling, sometimes it makes me nautious and it always hurts. I find myself holding it all the time. i was told it was muscle damage as a result of a nerve being damaged and there is nothing that can be done. I find this hard to accept and I can't believe there is nothing anyone can do. Has anyone heard of a treatment?

faithful1
Posts: 8
Joined: Oct 2004

It has been 17 months since my nephrectomy. I still have much numbness in that area. Also, I was a side sleeper before my surgery. Now I have much pain when trying to sleep on my side. I fell as though they put a drawstring in me and I am puckered too tight on my right side inciscion.

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

I had radical left nephrectomy 5 years ago. Still numb in some areas. The swelling took about 6 months or more to go down. I can now sleep on that side easily. I can say that it took two years before I felt normal and had my energy back - my surgeon said that was very normal. Hang in there - your body has had a major shock and it takes time for it to adjust fully.

Nandra
Posts: 2
Joined: Jan 2009

I am 3 years post op, and still have a lot of numbness, tingling and PAIN in the nephrectomy site. I too am hoping for an end in sight. Hang in there, i've heard that it is normal.

Nic

LisaD67
Posts: 26
Joined: Jan 2009

Hi Hannah,
My name is Lisa and I had a partial nephrectomy on my right kidney June 7, 2004. I experineced everything you are. I am still in pain and take pain meds. It gets frustrating, but they've run all kinds of tests and don't know why I'm in pain. Keep in mind everyone is different. And healing does take time. Take care and I hope you have some relief soon.

Lisa

mbates09
Posts: 6
Joined: Feb 2009

14 months post radical nephrectomy (traditional). No numbness, no lump anymore. It all went away after about 6 months and I was able to sleep on the surgical side again at that time. I had a lot of pain where they cut off the rib to get into the kidney, which felt "sharp" for about the same length of time and prevented my sleeping on that side. Perhaps this is what you are feeling there? Good luck on this and keep your spirits up. We are alive and this is a cancer that can be beaten if caught in time, and remember, it was in an organ for which we have a "spare". How lucky are we??

wordnerd
Posts: 7
Joined: Feb 2009

It is comforting to me that what I am experiencing is not uncommon. I have the numbness and the lump as well and was not prepared for either (my radical nephrectomy, laparoscopic, was just 6 weeks go). My numbness is dissipating gradually but the lump is not diminishing. Does anyone know if there's anything that can be done to help it along? Also, my lump is just below my belly button and to the right (makes me look quite lopsided). Does this location seem normal?

Indeed we are lucky. It's hard to keep that in perspective sometimes when "normal" is something different from what it once was.

KatieK11
Posts: 1
Joined: Mar 2009

I had a partial mephrectomy 8 weeks ago, I still have bulging and pains all around the incision site across to my stomach and I often get dull pain in my back too. The bulge seems to increase as the day goes by or if I do too much. I went back to work this week but was exhausted and in pain after 4 hours. I like to be active so its all quite frustrating. I suppose 'patience' is the key word for us all here and we need to take it easy and be kinder to ourselves.

nonnatoo
Posts: 34
Joined: Nov 2007

Hi Katie,

It sounds like you should be checking with your doctor about your complaints. I had a partial nephrectomy in Oct'07,and did have a problem about two or three months after surgery...urine leakage had formed a pouch in my abdomen.....It was resolved, and now I am fine.....cancer free and healthy. Call your doctor. It may be nothing. Good luck. Nonatoo

amkimball's picture
amkimball
Posts: 5
Joined: Jan 2013

I had a open partial nephrectomhy due to RCC.  I have a scar from my mid back to mid stomach (10 inches).  The pain is still there and I find it worse when I "work too hard", or if I sneeze or cough.  The lump is definetly there and it looks like a banana under my shirt on my left side...lol!  I'm glad to see that I'm not alone.  My Doc didn't tell me all these side effects.  Good luck to all.  BTW, my surgery was 1/17/2013 and I'm due for my 1st scan in August 2013.

MMondi1
Posts: 11
Joined: Jun 2013

I seem to be having a lot of pain in these areas after my surgery.  The doctor told me that is normal because of all the scar tissue, nerves and the fact that the veins all connect.  I havent seen that as any listed side effects.  Is this also a side effect?

GSRon's picture
GSRon
Posts: 1218
Joined: Jan 2013

Ah er.. yes..  that was the main symptom that got me to the next level doctor..  my one testie was tender and appeared to be enlarged.  The Urologist said no big deal.. right.. but he did get me that important first CT Scan that told me it was a big dea.  As your dr stated, all connected..  Bet it passes in a couple of days..

Be Well..

Ron

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Glad I missed out on THAT one!

Michael

garym's picture
garym
Posts: 1651
Joined: Nov 2009

The testicles of a little person from Texas hurt and ached almost all the time. He went to the doctor and told him about his problem.

The doctor told him to drop his pants and he would have a look.

The doctor stood him up on the examining table, and started to examine him. The doctor put one finger under his left testicle and told him to turn his head and cough, the usual method to check for a hernia. "Aha!" mumbled the doctor, and as he put his finger under the right testicle, he asked him to cough again. "Aha!" said the doctor once more, and reached for his surgical scissors. Snip-snip-snip-snip on the rightside... then snip-snip-snip-snip on the left side.

He was so scared he was afraid to look, but noted with amazement that the snipping did not hurt.

The doctor then told the him to walk around the examining room to see if his testicles still hurt. He was absolutely delighted as he walked around and discovered his boys were no longer aching.

The doctor said, "How does that feel now?"

The little person replied, "Perfect Doc, and I didn't even feel it. What did you do?"

The doctor replied "I cut two inches off the top of your cowboy boots."

 

foxhd's picture
foxhd
Posts: 1900
Joined: Oct 2011

...The numbness in the skin area can be referred to as , "superficial cutaneaous nerve syndrome." That means the sensory nerves in the skin area have been disturbed from surgery. They may never return to normal but should not be of any consequence after awhile. Just weird to get used to. As time goes by you won't notice unless you look for it. The testicle discomfort can be from the renal vein which affects usually the left testicle. Some get a vericele. I think that is how it's spelled. A vericose vein in the scrotum which can be very uncomfortable. But like the previous nerve pain, after awhile, it just is. You forget about it and move on. It seems to go away. Some of us have had so many different surgeries that if we focused on all these changes, we could go crazy. Eims for one never lets her vericele bother her.....LOL!!! Just keep moving forward. So many changes to our world. So screw it. Deal with it. It is not a functional problem.

freddyv33
Posts: 6
Joined: Aug 2014

I have gotten much comfort from hearing from others in a similar situation and felt obliged to share my own experience:

 

2 and a half years ago I had a nephrectomy of my right kidney and lost both a great deal of weight and strength from the 11 hour surgery. Afterwards I also experienced general swelling in my legs and testicular area. The testes seemed to stay swollen for a significant amount of time and in fact, the right side seemed to remain a bit swollen up until a surgery 2 years later to remove a tumor in the same area. About 8 inches of colon was also removed.

While I recovered my strength much more quickly after this surgery, which only took a few hours, I had greater swelling in my testicles and on my right side, where the surgery had been performed. I had a drain in the hospital and was "seeping" significantly up until I was discharged and then began to develop a significant bulge and my right testicle also became enlarged, though not especially painful. Four months later things have not changed much and none of my doctors seem too worried by this. I have also noticed a numbness since I have gone off the pain meds.

Reading here that this takes some time to subside has helped to lessen my concerns, especially since I am generally feeling well considering I am 2 and a half years into late stage kidney cancer.

Vivaldi
Posts: 19
Joined: Jun 2013

I too had a partial nephrectomy for an oncocytoma.  You should not think of this as surgery you did not need, yes, you absolutely needed it because the chances were 90% or more that it was RCC.  We got the really, really lucky straw there.  I absolutely not regret having that surgery one bit.  There is also some question about oncocytoma, in ten percent of cases it can harbour chromophobe RCC and there are also some researchers that feel oncocytoma may make a malignant change.  So getting that out was the best thing.  That said, I also have "the bulge" and the leg numbness.  I am sixteen months out now, the numbness is still improving slowly at this point.  I do daily massage and soak in Epsom salts.  For the bulge, well, I think it might be here to stay.  I also notice it is worse as the day goes.  The muscle just is not as tight as it was.  Small price to pay for escaping what is a terrible disease.  

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