Complications after a Partial Nephrectomy (Pain & Swelling)

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Nadrakas
New Member


Date Joined Oct 2016
Total Posts : 2
   Posted 10/19/2016 5:35 PM (GMT -7)   
Hi all,

New member here, and I had some questions (Forgive me, because this is a little long).

First some background. In March of this year (2016) I was diagnosed with a growth on my right Kidney (I also suffer from Kidney Stones -- "A Great Many, Bilateral" -- Last count: 30+). After seeing a Urologist who reviewed my CT Scans (one w/o Contrast & one w/Contrast) he related that in his professional opinion that the growth was likely a cancerous tumor (80% chance in his opinion). We discussed options, which really came down to two: Leave it and let it continue to grow or remove it through surgery. After discussing both options, I decided upon surgery which was conducted on 20 May 2016...

The Surgery was a Partial Nephrectomy of the Right Kidney, and after surgery I experienced a lot of pain, which I expected due to the nature and area of the surgery. After spending 3-days in the hospital I was sent home to recover and heal.

Three weeks later I went back for a post-op appointment with the Urologist, and he related that the tumor had been cancerous. I then told him that I was still experiencing a lot of Abdominal Pain and swelling (Went from 36" waist to 42" waist...and lost 14 lbs) , as well as pain in my right testicle. The Urologist then, in short, stated that I could not be -- was not -- experiencing abdominal pain or swelling "as it was impossible for the type of surgery that he performed, a Partial Nephrectomy, to cause anything like this;" he also related that any testicle pain would "end soon." He then said he wanted to see me in 6-months (December) and promptly ended the visit by walking out of the room and into an adjacent room to see another patient. And during the entire visit he did not even examine me...did not even look at the surgery incisions to see how they were healing, to even see if I was swollen or if -- if he had touched me -- if I felt pain.

Anyway...I made an appointment with my PCM because I was (and still am) in a lot of pain. My PCM did a thorough examination of me and determined that I wasn't loosing my mind (Which I was beginning to wonder about, after my visit with the Urologist...). In the time since then I have seen by a GI Doctor, who ordered a third CT Scan, and a different Urologist. The third CT scan did not show anything out of the ordinary (ie: Nothing left over/inside from the surgery and no scarring) and both the GI and new Urologist Doctors have both concurred that I have permanent nerve damage from the surgery.

I'm living in constant pain, I'm always exhausted, and I have frequent bouts of nausea; I have to lay down in a recliner several times during the day to recover from the pain and exhaustion, and I sleep there at night. I can't bend over, kneel, twist without increasing the pain. I can only stand for about 10-minutes and can only sit upright for about 20-minutes without hurting even more. Nothing and nobody can touch my abdomen or right testicle without causing me even more pain than I'm already in. I'm taking Hydroco/Apap (10/325; every 6-hours...) for pain that just takes the edge off and I absolutely HATE taking it, and Transderm Scop for Nausea...and the new Urologist has given me Amitriptyline in the hope that it will help with the testicular pain.

Now my PCM is considering sending me to a Pain Manager....and I'm at my wits end. I'm just very thankful that I'm married to a wonderful woman who's there for me...because I don't know what I'd do otherwise. Heck, at this point I wish I'd have left the Tumor in, but that's all "Water Under the Bridge" now.

So...here's my questions: Has anyone else had something like this happen to them or know of someone else who has? Or am I the only one who's come out of surgery and experienced pain like this?

Thanks for reading...

...I just needed to get this off my chest...

Peace.


~ Nadrakas (ie: Fred)

(Edited for misspellings and mistakes...)

Post Edited (Nadrakas) : 10/19/2016 6:47:28 PM (GMT-6)


Bay Area Guy
Regular Member


Date Joined Jul 2010
Total Posts : 296
   Posted 10/19/2016 6:45 PM (GMT -7)   
First of all, I'm sorry to hear of your issues.

I had a partial done in June of this year after having had a small lesion examined every six months since December, 2013. When I had my last ultrasound, in April of this year, the lesion had grown from an original size of about 1.5cm to an estimated 2.0cm. My urologist, a wonderful doctor, was not convinced it was malignant, but since it had grown, he advised me to get it treated. He recommended, and I accepted his recommendation, of a robotic assisted laparoscopic partial nephrectomy, which I had done on the 22nd of June. The procedure started at about 3PM and I was discharged the following day at about 1:30, so I was in the hospital less than 24 hours. When I got the pathology report a week or so later, it said the lesion was chromophobe renal cell carcinoma, a rare form of kidney cancer that appears in only about 5% of cases. Fortunately, the highlights of this form of RCC are that it rarely, if ever, recurs and rarely, if ever, spreads. So, I'll have regular screenings every six months for a few years and then annually after that.

OK, as to the recuperation. I, too, had some sensitivity in one of my testicles. I think it lasted about a month. It seemed like it was enlarged, but I might have been imagining that. Over time, however, it's gone back to its normal size. The only other unusual situation is that I have had a stinging sensation in my right hip since the operation (and the operation was on the right kidney). It doesn't hurt at all, and I have a free range of motion, but when I touch it or tap it, it feels like your arm or leg feels when it "falls asleep", kind of tingly. I reported it to the nurse practitioner when I went in for a followup about two weeks after the operation, but she didn't think it was anything major. I see the surgeon for my first screening in mid-January (after I get a chest X-Ray and CT scan), so I'll ask him about it.

Other than those two things, my recovery has pretty much been textbook. Any pain I had was more discomfort from the incisions than anything else and as the incisions healed, that went away. I was walking 5 or 6 miles a day within about a week.

It seems like the procedure you had was a fully open procedure, not robotic assisted nor laparoscopic. I've had a couple of operations (completely unrelated to my kidney situation) on my abdomen and I can vouch for the fact that recovery from a fully open operation takes a lot longer. Because they are cutting through some pretty large muscle groups, the pain when those muscles start to knit back together can be pretty tough. My father, who had many an operation in his life, said that it was easier to recover from two open heart surgeries than it was to recover from abdominal surgery. When I had my abdominal surgery in May, 2010, it took me until September, 2010 to feel like I was healed.

I don't know if this helps or not. But I wish you all the best.

Nadrakas
New Member


Date Joined Oct 2016
Total Posts : 2
   Posted 10/19/2016 7:21 PM (GMT -7)   
Thanks for responding Bay Area Guy.

The surgery actually was a Robotic Assisted Laparoscopic partial Nephrectomy (Just looked at the Insurance Papers and the Hospital Paperwork to make sure...). It wasn't a "full open procedure" like it used to be "back in the day" (ie: Cut wide open to access the Kidney...). According to the Urologist who performed my surgery and to the second Urologist, that type of surgery is rarely performed nowadays.

I fully expected some residual pain and minor swelling of the area for a little while after the surgery, and that's what the Urologist/Surgeon told me to expect -- afterall, it's still a major surgery. However, that's not what I happened. Since the surgery the level of abdominal pain has only receded a little from what it was after the surgery, and I'm also swollen in the abdomen; plus I constantly experience pain in my right testicle.

When I went to the GI doctor, she did a full exam on me and told me that the constant pain and swelling that I was experiencing wasn't normal, and that's why she ordered a third CT Scan -- in order to see if something was left inside from the surgery or if there was scarring from the surgery that could be causing the pain; however the CT turned up nothing. Then, when I went to the second Urologist, he was concerned at what I was experiencing, and he gave me a full, hands on exam (After reviewing the third CT scan). Both the GI and second Urologist Doctors separately came to the conclusion that I have permanent nerve damage because of the surgery...

I'm just trying to find out if I'm the only person to have experienced this, or if someone -- anyone -- has had the same thing happen to them.

EDIT: Bay Area Guy, please don't think that I dismissed what you posted out of hand. I didn't. It was very helpful, as it gave me a good point-of-reference and comparison to work with (I didn't really have anyone elses experience to go on...just some technical description off of the internet, and they aren't very helpful...). You were healed in 4-months (Surgery May 2010, healed by September 2010), and you were walking 5-6 miles within about a week of surgery. Now, here I am 5-months later and the constant pain is barely below what it was shortly after I was released from the hospital, plus my abdomen is swollen and I have testicular pain. As for getting around, I need a cane to assist in walking because of pain, dizziness and overall weakness/fatigue. As I said in my first post, if I'd had any inkling that this could happen I would have kept the tumor and wouldn't have even gone through with the surgery. Heck, there was no mention of the possibility of long-term/permanent abdominal pain/swelling or even testicular pain of any duration...only of the potential of blood transfusion due to blood loss and a few weeks of pain, as well as the obligatory "this is surgery, and as with all surgery's there is the possibility of death" talk (along with signing of paperwork...).

Peace.


~ Nadrakas (Fred)

Post Edited (Nadrakas) : 10/19/2016 9:20:01 PM (GMT-6)


Bay Area Guy
Regular Member


Date Joined Jul 2010
Total Posts : 296
   Posted 10/22/2016 11:31 AM (GMT -7)   
You might also want to join and post in the Cancer Survivors Network. They have a forum specifically for kidney cancer. They, unfortunately for the people that have it, have a lot more activity on their kidney cancer board. Here's the URL: http://csn.cancer.org/forum/142
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