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i had an open partial nephrectomy almost two years ago. almost immediately my side started to swell up. i talked with every doctor i could about it because it was getting bigger and bigger and a lot of discomfort. some doctors said it was muscle laxity and some said a hernia, but none would do anything about it. i talked with 12 or so doctors. i finally found two groups who said they have never had a situation like mine but agreed something needed to be done. the first set of doctors researched possible treatments for seveal months and decided to try a hernia repair. they performed this surgery june of 2009. the side has only gotten larger and has become very hard. before when i laid on that side it was painful but the insides would retract into the abdominal cavity. now the side is hard as a rock and is always sticking out so i can no longer lay on the side. it always hurts and is now about the size of a football. has anyone else heard of such a thing. it has effected my life and reduced the quality of life. i can no longer sleep in my own bed many nights and so my wife goes off to bed without me. HELP ME IF YOU CAN.

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I'm sorry to hear that things have gotten worse for you and I think it's pretty unfortunate because it sounds like you have been suffering. Have you spoken to anyone about other treatment therapies?
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Your experience is almost identical to mine but luckily we have a large bed.
My open partial nephrectomy (right side) was done in October 2009 and now (Jan 2010) the bulge is pretty constantly large.
The scar extends much farther to the front of my body than usual scars of this type.
Like yours, my bulge disappears (falls?) into my abdomen when I sleep on my left side and rises into my body due to pressure when sleeping on my right side.
My right side stomach and groin are numb as is my right buttock...basically anything below the scar line.
There is almost constant discomfort which I have slightly relieved by wearing an elastomeric singlet called Equmen Precision Undershirt

I was initially told the cause is fluid build up and to be honest when I bend down I get a feeling in my groin similar to when I had fluid on my knee from sporting injuries.
CT scans showed very minor fluid.
The CT scan noted "atrophy of the inferior right rectus muscle and the appearances may be due to post surgical wall denervation."as well as "fat stranding".
I think our abdominal wall nerves have been cut and if they regrow it could take a long time.
I have had no follow up surgery but might consider liposuction in the future (depending on medical guidance).
Herbal medicines and change of diet have not helped...this is not bloating it is a physical deformity.
I am sorry I have no answer for either of us but send my best wishes.


***edited by moderator*** web addresses not allowed
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Wow, I finally found peolpe who are experiencing the same things I am going through. I too thought I had developed an incisional hernia after donating a kidney in May of 2008. I just recently had enough of the discomfort of the bulge at the site of my open procedure to take my right kidney. So I made an appointment with my primary care physician who was sure it was indeed an incisional hernia, but wanted a Ct scan to confirm. The scan was negative for a hernia but my pcp wanted me to see a surgeon anyway.
The surgeon also confirmed no hernia, but rather atrophied abdominal muscles due to the severence of nerves and muscle tissue from the rather large incision. He also said there was nothing he could do surgically to alleviate the problem, but he did prescribe gabapentin to help with the pain. This a a drug used to control neuropathic pain. I am reluctant to start a daily medication for something that doesn't cause me daily debilitating pain, but if this keeps getting worse I may have no choice. He - the surgeon also said no amount of exercise will bring back those "dead" muscles, so I am at a loss as to what to do about the rather ugly bulge. Maybe I will give the singlet mentioned in the first post a try. Anyway, thanks so much for sharing your experiences and I will check back to see if any new developments occur.
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I can't believe that I have found individuals that have had the same situation as myself. I had a partial nephrectomy and then a complete nephrectomy eight weeks later because of a urine leak that further damaged my kidney. The doctors removed my tumor which turned out to be renal cell carcinoma, but I was left with this giant cantaloupe size bulge in the back end of my incision. It's not fluid and I got the same reactions from my doctors. They initially thought it was a hernia, but CT scan was negative and now I am being sent to a pain control clinic. They said that they think that we can control this debilitating pain with nerve blocks. They said if they can isolate the nerves that are damaged they may be able to removed the damaged muscle tissue. They usually avoid discussing what actually caused the lump or if and how they will fix it. I hate to think that I could be stuck with this the rest of my life, but listening to others, I am not feeling hopeful. Please email me personally if anyone has had any success in determining what caused this or what it is and can we fix it. I am a young mom in my 30's and just want to enjoy my 18 month old. Thanks and good luck everyone.
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Hi This is Col back again.
After more than one year little has changed physically for me. The singlets were pretty (but not totally) ineffective and the bulge has become even more unsightly. I live in Sydney Australia and would not consider going to the beach. I was shown my scans by a co-operative doctor and the view from above shows a thick healthy muscle holding my left side in shape and a very thin weak muscle unable to hold my right side in shape. So liposuction is out of the question unless I want to liposuck my intestines. I am now considering pain management options including hypnotherapy and accupuncture. I am also considering a TENS machine for electrical muscle stimulation despite advice from several doctors it would be a waste of time (oh yeah?? well get into my skin and see if you would not try it??).
Now I said nothing has changed physically but mentally I have decided to make a big shift. I am now 64 and until recently wondered just how long I have left to live with this rubbish life and an "exit" would be welcome. Now my grand daughter has turned one and I realise I am luckier than many men who die too young to see their grandchildren grow up.
I am determined to block out the discomfort until it becomes a minor part of daily living.
My wife had a full mastectomy, full lymph node removal, chemotherapy and radiation two years ago.
She is in much better shape than I but is just so happy we are both above ground so Linda please stay mentally strong and enjoy your baby who from the sound of it is lucky to have a Mum.
I would love to contact you directly but I don't think this site allows for this.
I will keep everybody posted on my progress but I have a heavy workload until I retire in Dec 2011 so I might be slow in acting on my intentions (despite prodding from my wife)
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About a year ago I donated my right kidney to my sister and they used the open procedure to remove the kidney. Almost immediately I noticed a bulge on my right side that has not gone away. It sounds like I am in the same boat as some of you on this message board. From reading the messages above it doesn't sound like there is any easy fix to correct this. Does anyone know whether this condition is due to errors by the surgery team?
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Hi Ted, from my enquiries it does not appear to be surgery error. The nerves in the area are not regularly patterned for various patients and are almost impossible to detect/avoid. Once severed almost certainly they do not reconnect. I think the surgeons should warn about this prior to surgery. My latest experience is with a pain relief physiotherapist who is giving my back and side muscles heavy physio and until three days ago it seemed to be giving me real relief. Then I went backwards for three days and last night took a painkiller. I am hopeful I can advance (two steps forward then one step back?) when I visit him tomorrow. This bloke is also "starting" my stomach muscles but he has declared my oblique muscle right side is beyond repair. As I have said before we have to accept we cannot return to normal but make the best of the situation. Cheers to all from Sydney. Col
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Hi Col. I wanted to give you and update on my situation as things have made a drastic turn around. I believe that I finally found the answer to my nightmares. I first got sent to one doctor that said the bulge in my side was not a hernia and then was sent to a pain clinic to manage pain that they did not know where it was coming from. After getting put on high doses of morphine patches and other narcotics. FINALLY, I met with a surgeon that was head of surgery at the hospital that said I had a softball size hernia in the right flank muscle with my intestines and my liver poking through the hole. I had the hernia repair done on February 14, 2011. They had no muscle tissue at the top of the hernia to sew the repair to so they had to sew it to my ribcage. Now it's been almost 8 weeks later and I still feel some pain, but the hardest part is not being able to lift my 20 month old for 6 weeks and the withdrawl from all the narcotics. Today I am taking care of my daughter with help from family and down to a few pills and should be off all narcotics in a week or so. Thank you for giving me something positive to look to. I know that my family is the most important thing and now every time I look at my daughter I feel inspired. I truly wish everyone here the best of luck with their troubles and hope you all find the same solution and joy that I have found. Take care! Linda
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Well go figure, don't take this the wrong way but thank God for all of you :D I thought I was the only one with this bulge problem which I thought was me getting piggy lol. WOW it's so much easier knowing I will have to manage this for more then a few month. Most likely from what I read, year(s). My brothers lost both his kidney due to diabetes :(  So on April 27, 2011  I gave him my right kidney. Wasn't easy for him he had to stay in the hospital for a month due to complication  including going flat line during surgery. But Thank God he is now whizzing like a horse lol. I cant imagine how he must of felt not pissing for more then a year damn that crazy. But as for me well,... I look like I'm 3 to 5 month pregnant depending how long I am on my feet. Hurt like hell for sure. Like the anesthesia is wearing off. Pain and numbness from the bladder to bottom of right rib cage. The spasm pain which feel like getting stuck with a hat pin, freaks the pluck out of people. Geeez if I had a nickel.... how many times I heard someone say Are You OK?! hahahaha geniuses all of them LOL. :) Well I walk with a cane always and use an abdonimal bidding which minimizes muscle movement. I know it will take years before I can do cartwheel and spin on my head hehe but everyday I can see and feel miniscule improvement.  The other day I finally was able to take full walking strides with my right leg. YEAHHH BOYYY! felt great but of course I later paid the price for showing off. You know I 6 month pregnant HA! As far as those pain killers they give me (oxycodone) what a waste. It created more problems then I need. (Look it up). Midol works for me (pyrilamine maleate look this up :D), Excedrin (nsaid) and warm epsom salt bath. Any how, stay strong stay positive and one baby step at a time. Remember, half the battle is lost If you feel sorry for self so don't. For now mountain climbing and zumba dancing will have wait so I may carry my brother's cross. PS miss the sex LMFAO. 
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Hey Hey Nando here wow I guess everyone gave up on this web site. auh shucks. Well if someone ever does. I just found, by the grace of God, something that really helps with that ugly painful swelling, loaf of bread shape, oblique muscles :P ha. I used it today, after straining my muscles on Monday, missing work on Tuesday, feeling like what the cat dragged in today.  ***this post is edited by moderator *** *** web addresses not allowed***

 

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I too am suffering with the bulge after right side hand assisted lapro nephrectomy. I felt it the first time I stood up after surgery. It recedes into my abdomen when lying down, but as soon as I get up it is there. It is now 8 weeks since surgery, and nothing has changed with the bulge. I measure around my waist in the a.m. and by evening it is 1 inch bigger. My surgeon really isn't too interested or concerned about it. Said it wasn't a hernia.  Just said give it time to heal. As far as pain, I am doing okay now.  From all of the posts, it seems like there is no hope for this bugle ever going away. I am thankful my cancer is gone and if the bulge is permanent I will take it over cancer! Anyone have anymore info on this side effect of the surgery?
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Pafriend Nando here  :-) cancer wow God bless you. Thats great insight on your part. most people don't know how to count their blessing. Well its been 4 month since my surgery and all I can say is that i'm  a lot stronger. I can about walk 10 blocks without stopping or feeling like I just ran a marathon. :-D But, still swollen if I stay home resting I look like I am 3 month pregnant and when I am working 6 months HA XD. I think why we swell up is due to the muscle producing latic acid trying to mend itself. Pafriend I was told this can last for several month to 2 years. Oh well so much for zumba dancing LOL. I'm in no rush to get back to normal I rather deal with this then try to push it and cause a hernia. Hope this helps feels good to know Im not alone Godspeed
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Thanks nando,  it does feel good to know that we are not alone with the bulge issue.  I hope someone lets us know if a year or two down the road it ever gets better. In the meantime, we just keep healing and keep going on with life. My daughter is engaged and I am trying to focus on the happiness that life is bringing. Good luck to you and to all of us in the recovery mode.
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No problem PAfriend we're all teachers and students to each other :D. GUESS WHAT this stuff really helps its called ARNICA. I use the cream on the swollen area and the pain subsides. When I go out I take the pellets or the strips. The strips I think are better the disolve faster and all you have to do is just place it on your tongue. This is a lot better then pain killers which just mess up your PSYCHIC. It homepathic so its safe. I hope this help you. Congrats to your family. remember no matter what any step forward no matter how small it may be is always better then any step backwards so stay true, stay strong. Things do get better :)
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