Complications after a Partial Nephrectomy (Pain & Swelling)

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)

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)

Hey buddy, i have to say it is good to hear i am not alone, interesting how everyones case is slightly different. Mostly i share your grief with a few differences. Partial nefrectomy right side in aug 2016, eight months later the urologist still says it was major surgery what do you expect, family doctor and 7 other health care professionals wont talk to me. I do not have nausia, but pain from scars down and including testicle, also penis shaft after the cathider was ripped out wrong, become so strong i have to remove clothes and can not handle anything touching me. Finally i went to a private mens clinic last week and he listened, baby steps