Open Partial Nephrectomy

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RE: Open Partial Nephrectomy

by theelusive11 on Wed Nov 23, 2016 01:28 AM

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Tired is very hard for me to judge because we were in the middle of a lot of other things to include a move. I had previous surgery for hernia so I didn't drive until I was past 12 weeks just to make sure I would not herniate again. My surgery was 31 Oct and I lived in Texas so we still had plenty of sunshine. If I had lived back in the north I would have had the winter gloom. I stood straight up from day one because so many people walk hunched over and then complain their back hurts, I figured I would just get the hurt over on day one. How far were you cut? That will have a huge effect on healing time. I am 8 years past surgery and I still have some numbness. I have a habit of pulling my shirt away from my stomach even though I don't feel it. Underwear could drive me crazy if it starts moving down. Jeans aren't my favorite rubbing on the scar numb area either. It does not hurt persay but it just feels weird. I do have a lot more feeling in the area in the in the past couple years than I did before. It takes time for nerves to reconnect. If you have anymore questions or I didn't answer well enough let me know. Rest and more rest. Go for walks. Don't over do it.

RE: Open Partial Nephrectomy

by Trouge on Sun Jun 25, 2017 08:53 AM

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Hi ?? I'm Gregory M I'm from Crowley Louisiana. Howdy let me start about my wild case So march 28th I have disconfort and evently cave to go to the emergency ?? room I'm not one for Hosptials or doctors. I get there tell them I'm having sever pain on my left side with vomiting, gives me meds sends me to the back "surprise" you have a kidney Stone ?? Dr releases me with Medication to pass it so on. I get home with the pain meds wake up walk to the toilet with my screen contraption to catch my stone ?? catch it no problem!! Contact the Dr advises even though I passed the stone to take "flowmax" made me feel like a complete drug induced haze, so I almost canceled a rountim check up for a regular visit. So I go to the visit now for your reading purposes both hospitals are in different cities but connected Dr sits tell her about what had accurd days before she's says so what did you think about the mass ????????????? Never informed me about my mass in the ER or the size so of course I'm in complete shock So fast forward so tests the size is 5 cm. Set up surgery 3 weeks later. 9 days before my surgery I get sever unbearable pain on my right side so again I rush to he Same ER so some routine tests Dr reviews old CT SCAN!!!! Says you have a virus now his is after I did a new scan might I add 20 min later the Dr and his nurse rush in Mr mouton you have a stone in your appendix and you need emergency ?? surgery so the next day at another hospital I have my appendix removed yay righ !!! Nope Dr in new Orleans pushes surgery further back I arrive new Oreans they prep me for surgery stats the surgery will be 3 hours due to me having a Partial nephrectomy. Take me back to surgery they breaks a peace of the leper scopic tool inside me and lose a needle my surgery took 7 hours Since my surgery I'm still in pain my surgery was June 1st were the 25th and pain has improved but it's Exstreme I'm still taking Vicodin 10 every 4 hours with a muscle relaxer I'm hoping I can heal better and pain is less but I have never ever debt this pain I have had gallblatter surgery/ appendix/. And neither was Thai pain. Now I did only have 5 scars my tumor was cc clear cancer carsanoma anyone Stlll having such pain after the leper scopic

RE: Open Partial Nephrectomy

by peggyznd on Sun Jun 25, 2017 09:35 AM

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A stunning story, and wonder if anyone has had such a combination of problems and lack of communication!  As I understand this all started with severe pain on the left side, which is diagnosed a kidney stone by the ER docs, based on a CT.  You were able to pass the stone, thinking all is good. (End of March.)  The Flowmax is pretty tough on you, but you do get a regular check up, where the different doc who can access the images tells you that you have a 5 cm --assume this on the kidney, but it is not clear.  You are scheduled for surgery in three weeks, but before that you have severe pain on the RIGHT side.  Old CT scan is read, but then a new one is done.  This time the verdict is a virus...until they rush in to tell you that you have a stone in the appendix.  That leads to recommend emergency surgery to remove the appendix, but the NOLA people want to do the partial nephrectomy first.  Supposed to be the laporascopic (small incisions, etc) but the 3 hour surgery becomes 7 hours as they break the tools, and lose a part of the needle, have to dig around and get it out--what a mess!

Sorry to hear that this was finally diagnosed as clear cell renal carcinoma (ccRCC for short).  This is the most common kidney cancer, by the way, and is now something that you will have to monitor for the rest of your life.  It is a tricky kind of canceer--you have seen all of this so far--and is officially Stage I (of IV), so you are likely to be told that they 'got it all', and that you don't have to worry.

Sad to say, you do have to worry, and especially when you have ongoing pain, and have not mentioned whether they really did all the testing.  ccRCC most often goes to the lungs, and to the bones, and can do so even when it is relatively small.  Even VERY small tumors can be quietly and invisibly growing, not easy to see even during surgery, and must be looked for with CTs and bone scans.

At this point the issue is pain, and that amount of Vicodin with the surgery, even with the complications, is a worry.  I would INSIST on a complete CT scan to see if there is any other part, or damage from the part hunt(!) and so on.  At the same time, you need to gather all your records from both places, including the CT reports and the actual images of the CT which will come on a disk.  There should be surgery notes, reports, and the pathology testing which is under the microscope, showing the clear cell type.

Too often the surgeon is able to handle the surgery--should not have been such a mess, I assume--but they never are the ones to give you the cancer follow up advice.  You need to see a urologic oncologist, and if you can travel to Houston, to MD Anderson, that might be the best.

I write a blog about kidney cancer at www.peggyRCC.com , was diagnosed 13 years ago with a larg 10cm tumor, tiny metastases throughout my lungs, responded to the only drug of that era, which cured me.  I take no meds, feel well, am taking care of grandkids in Germany for a month, and am pretty knowledgeable about kidney cancer and misdiagnosis.  I was told that I had a stomach ulcer (which never showed up in the pathology report) and then that I had liver cirrhosis--and then they found the softball-sized tumor!

Happy to write directly at peggyzuckerman@gmail.com if you like.

RE: Open Partial Nephrectomy

by Limah on Sat Aug 12, 2017 09:10 AM

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I'm so glad to be here I had my surgery July 7 2017, i was ,hurting bad so went to ER,they kept me finding Gastric Ucler Gall Stones had my Gallbladder out when i was 20 i amnow 63 then they found a mass on my kidney 11cm i am all swollenand have a big knot on top of the scar mass was benign thank God cn't sleep good

RE: Open Partial Nephrectomy

by peggyznd on Wed Aug 16, 2017 11:00 PM

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That is a pretty huge mass, so good news that it was benign, but what was it diagnosed to be?  REally strange, and after their finding 'gall stones' when you didn't have gallbladder...

Have you seen the final surgical report and the pathology report which tells you about the surgery and eXACTLY what they found?  This is your right, as you know, and good to have it in hand to study, and to share with family so they are aware, should you ever be back in the ER!

RE: Open Partial Nephrectomy

by sandracotterill on Sat Apr 04, 2020 07:51 PM

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HI i am 2 and half weeks post op, still in agony, main thing is cramps in tummy and back and cant sleep as cant get comfy. how long does this pain last ? 

RE: Open Partial Nephrectomy

by peggyznd on Sat Apr 04, 2020 10:15 PM

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That is a pretty long time post-surgery to have that kind of pain.  I would want to talk directly to the surgeon, and not to be able to sleep, although some light pain killer would be helpful.  There is a possibility that you have some infection or that you have developed an adhesion, where the cut area are not healing properly.

Get on the phone first, as you do not want to go into a busy clinic setting unless it is necessary.

RE: Open Partial Nephrectomy

by sandracotterill on Sun Apr 05, 2020 09:30 AM

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is it, i just havent been told anything of what to expect after surgery, but i would have thought would be some improvement by now. i will get in touch with hospital tomorrow then and just check it out. thanks for reply 

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