rare complications after open nephrectomy

I called Mayo Clinic and they told me they were not able to help me I also called Cleveland clinic and one doctors office told me they only do emergency room surgery. I did see the Doctor in Nashville, he sounds the most promising. Please let me know how it goes with your husband. I pray all goes well for him. I would love to hear what the doctor says in Nashville, he got awards for his work. God Bless, and I pray your husband gets good news!

Yes I did have a rib removed and I have a hernia from my spine to 3/4 of my belly. I would love to find a Doctor that could repair me, and I am seeking help once again. I do have a problem with bowel blockages. When you go to the emergency room they never know what to do with you and always say you are a rare case.... Please if you find any help please let me know! I will tell you I did find a machine that is called whole body vibration machine and it helps with the shooting pain. I use it for 5 min many times through the day and it helps me a lot, so much that I purchased one. If you ask your doctor he can send you to PT and you can try it when the pain is high and you will see what I am saying. I wish You the very best, God Bless ! P.S. I don't think this is as rare as they say it is, seems like many of us have the same condition.

I have the same problem, No one has answers! But I did find a machine that helps with the pain. I got a machine called whole body vibration machine... it helps with the pain ... I use it about 5 to 6 times a day just 5 min. per treatment .. this is the only thing I have ever found to help me. I also use a tens unit, it helps alot. But I always wake up in bad pain, I had a rib and 1/2 a kidney removed. I have muscle atrophy. I do have pain daily, but the machine I told you about helps. Good luck and God Bless !

I to had a partial nephrectomy 4 yrs ago and have a painful lump on the left side was told it was a lacks muscle due to being over weight did not have it before the op, my GP asked for a second opinion over a month ago so I phoned to see what was happening only to be told the appointment was cancelled by the consultant, I am so fed up with the pain and the lump that sticks out no answer

Your not alone!!!!!! In 2000 at age 59 I had a radical Nephrectomy. The sad thing is that this surgery was being preformed Laproscopically for two years at UCSF and other hospitals in the States. So HOW COME some doctors, (SPECIALISTS) were still doing radical's??? Patients that had this surgery Laproscopically don't experience the trouble we have. I am in constant pain ad or discomfort. In addition, I have numbness in my upper thigh. I spent 5 years angry to the point of depression. I cannot stand long enough to prepare a meal, shower or shop. I was finally relegated to a mobility chair and that was humiliating for me. I am now 73 years and have come to terms with this disability. Like 12 step programs say, "Accept the things you cannot change and change the things you can." I hope you find peace and acceptance.

I also have an abdominal bulge following a right partial nephrectomy in March 2013. I had angioplasty after surgery to plug micro nephretic bleeds. I had DVTs that resulted in pulmonary embolisms. I was a really sick guy (for an avid mountain climber) for 3 weeks. The new normal is definitely different, but hey, I did have cancer. The swelling is worse after exertion and causes pain when lying on my left side. It feels different than fat - it feels like fluid. (Which is what it probably is.) I am slim and I now have a gut. I have intentionally lost a bit of weight but cannot lose the gut. I had an umbillical hernia from a previous abdominal surgery. This is now failing due to the outward pressure, which is getting worse after 18 months. A follow-up CT 6 months after surgery showed, among other things, extensive scarring of the liver. I would encourage anyone suffering from a similar bulge or swelling post-op, to ask their physician about "portal vein hypertension" - which results in a fluid build-up in the abdomen due to damage to blood circulation to the liver - possibly caused by the surgical process. In my case, it my be a blood clot in the blood supply to the liver. Ask for a review of pre- and post-surgical CTs specific to the liver, and for blood tests to detect the function of renin-angiotensin, which governs fluid balance. There is no easy fix to any of this, and some rather frightening complications can ensue if the liver actually is being damaged by the process. See if you can find an internist or a physician willing to believe your story and do some research on your behalf. Then decide if you want to entertain any of the several diagostic and treatment methods that might ensue. I wish that all who have this may find peace and comfort.

I had my left kidney removed in 1998!  I developed the buldge soon thereafter.  I have lived with it all these years and tried to keep active and just wear loose clothes.  I never showed it to my family doctor because I didn't want to consider surgery.  Last week we spent many hours driving in the car, and not taking a break.    I woke up with a terrible pain in the area and was convinced that something was being strangled.  I got up and walked around and it subsided.   I went to a surgeon who ordered a new CAT scan to see if it has enlarged.  He told me that the surgery to place mesh is complex and would restrict movement.   All I want to know is if I can just keep it as is without worrying about an emergency.  I am going to see eanother surgeon next week and hope that they just tell me to go home and wear a supporter and dont sit in the car for more than 2 hours.

Hi had partial nephrectomy two weeks ago only suffer nerve pain .think you all are so brave please keep spirits up and i hope you all find relief

I have the same problem, have not had the repair surgery but looking for a doctor that can repair this. We do need a support group. No one understands how painful it is. I wish the kidney foundation would start a support group. I am sure if a Doctor had this problem, they would come up with some answers. I wish you the very best! Please keep me posted on how you are doing, and are you doing any better?

We need a support group ! I have the same problem, along with many complications

Hi PAfriend, not sure how long ago your post was, but am curious to hear how things are going? I also had open partial nephrectomy 3 months ago- and have the exact same thing going on as you describe. Hope you are doing well and that time has improved you symptoms :-)

Hawkeye, I have the same thing going on. Had an open partial 3 months ago. Have things improved at all for you..or gotten any worse?

Hope you are going better !

Hi Lisa,

Read your post and wondering how you have been doing since your surgery ? Did the buldge ever get better? I hope so!
I am 3 months post open nephrectomy with the same issue!
Hope things are well!

I have the same problem, lost 1/2 kidney and a rib , they left a stub and when I swell it hurts, along with my abdomen, I get bowel blockage in the bulge. My intestines cause me great pain, can not take pain medications gives me bowel blockage. Have used many braces and they cause me issues with my spine, for years I could hardly walk. Still looking for help and seems there is no help. I have weak spells when I swell, and have searched the internet for answers but unable to find any answers. I have to sit in a recliner to ease the pain, many sleepless nights, due to the pain. If you find any answers please keep us posted. Seems no doctors have a answer, I pray you find the help you need.

Who helped you. I have the bulge but not a herina and it causes me great pain I can not find a doctor who can help me .... Did it remove your pain ?