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Lymphocele after prostatectomy

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Posted 4/29/2017 6:26 AM (GMT 0)
I had prostatectomy 4 weeks ago. All seemed to be fine except 1 week after removing catether and leaving hospital, I started having terrible thigh, hip and sciatic nerve pains each time I walked hardly 10 min. My doctor drained some fluid from the pelvic area, says it's a lymphocele and sent me to a professional physiotherapy centre to have lymph drainage massage which he believes will resolve the issue. I will start next week. The pain is so bad when it hits and I can't go back to work till this is sorted out.

I also don't know the difference between lymphocele and lymphedema. Any experience/advice?
Posted 4/29/2017 7:36 AM (GMT 0)
I had two lymphocels golfball size 3 mos post presented with malaise and low grade fever...they self resolved within two weeks..there was never any pain at all...I would get a 2nd opinion with the type of pain you are getting...that does not sound like symptoms of a lymphocele...lymphodema is rarely presented in the in the pelvic area...more common with breast cancer and nodes removed in that area...how many nodes did you have removed...were they cancer free...was the medico who diagnose you a surgeon or urologist...If fluid was drained i believe you have one...which does not mean...there is something else going on with sciatica and the rest of the pain issues...I had 27-29 nodes removed cancer free...never heard of any...zilch...zip that caused the pain you describe...so suggest you see a doctor who is up on internal medicine...good luck...but then again Im not a doctor...just relying my experience...stuff I read and/or pick up here and there
Posted 4/29/2017 9:17 AM (GMT 0)
Thanks a bunch for your reply. He's a urologist and he's the surgeon that did my surgery. 28 nodes removed all clean.
Will try the professional massage and if no luck will consult another doctor. He's starting to piss me off.
The funny thing is that my pelvis and my upper left thigh are only slightly swollen, yet that's enough to cause all that pain. Today I can't even lift my leg high enough to wear my pants or my shoes.
Posted 4/29/2017 4:17 PM (GMT 0)
Thats reasonable to go with therapist...I never heard of that either btw...doctor will usually just drain them in an office visit and thats that...I would bring it up to your surgeon...if he balks and gets huffy with you...well that would be quite a tell...Is your surgeon form a major cancer center or from a local hospital...I could very well be wrong...but I would definetly talk to another surgeon out of your network about this...It would be nice of others respond...but I am annoying...and sometimes...the "innocent" suffer for that...ya know like in the movies...when they cant get the one they want they go after a loved one...that is subtle...yet annoying... "I paints what I sees" Gahan Wilson...good luck ....
Posted 4/29/2017 8:56 PM (GMT 0)
If there is any fever involved, time to head to the ER...These things can get infected and that can be life-threatening...You had many nodes removed..All that lymph fluid has to go somewhere....
Posted 4/30/2017 5:19 AM (GMT 0)
Thanks a lot. Hardly any fever. To complicate matters, I seem to be having a cold with all its symptoms but no fever.
Posted 4/30/2017 6:01 AM (GMT 0)
logoslidat

I live in switzerland. I went to a specialized urlogist/surgeon.
I will go to my general doctor on tuesday as it is not getting better. I don't have fever but I shiver from time to time ... maybe he can suck out some liquid. The other one did it and it did me good. He sucked up all he could from the pelvic area.. don't know if there is any still trapped there now or a bit everywhere. The urine now is almost always amber color
Posted 4/30/2017 9:23 AM (GMT 0)
Good Morning, just wanted to let you know that I experienced the same pains in my left leg and thigh and back after rp. Mine started about 2 weeks after surgery I did guide a bit of research on it and found out it's pretty common when you have surgery as there is a lot of moving of nerves. I had 35 lymph nodes removed both seminal vessels and one nerve, gleason score of 9. Psa 19 what helped me was walking thru the pain by 4 weeks out was up to 6 miles every other day. At 6 weeks out ended up with incarcerated umbilical hernia and had to have emergency surgery now a week out and back up to 3 to 4 miles each day. I did not want to take pain medicine so just took Tylenol this seem to help so I could sleep at nite! Hope things improve for you.

Skypilot56
Posted 4/30/2017 9:46 AM (GMT 0)
Skypilot56

Thanks for your reply. It is certainly comforting.
Was the surgery for the hernia or for the lymphocele?
Posted 4/30/2017 10:13 AM (GMT 0)
For the hernia what was surprising they wanted to do the surgery right away cause they said I had guite a bit fluid in my abdomen from a cat scan and thot it could be a leak in my intestine from the hernia after getting in there they think it was still from the rp surgery as it takes a while for your body to absorb all the fluids.

Skypilot56
Posted 4/30/2017 1:22 PM (GMT 0)
I had 44 lymph nodes removed and had significant swelling from my abdomen to my feet, it was a high grade of pitting edema. This started a few months after surgery I think (it's all kind of a blur now.) There was no pain associated with the swelling though.

Thanks to a pneumatic sequential compression leg and torso wrap I use every day, the swelling is mostly gone. There are a bunch of bands (rings) of air pockets that inflate and move up to my torso which forces the fluid up. Unfortunately I moved up a size in pants.
Posted 4/30/2017 11:40 PM (GMT 0)
I am relieved that it seems to be associated with the node removals and...based on the replies and not something else you have deal with...that and the fact that previous lancing of the lymphocels did in fact offer relief...lymphocels are not uncommon with node dissection...but are "rarely" disclosed as a possibility by the surgeon... Its great the nodes were negative...Personally...I consider them part of a thorough prostectomy...They are done fairly often even in low risk cases{anecdotally} in teaching hospitals...prostectomy 101 for newbies...depending on the surgeon in charge of the operation and operating team...this was relayed to me by my surgeon...I was under for 4.5 hours...
Posted 4/30/2017 11:49 PM (GMT 0)
Switzerland...Are you originally from Italy...your name has that ring...but maybe I've seen too many movies...
Posted 5/9/2017 5:10 AM (GMT 0)
My case turned out to be a massive infection following the lymphocele.

I was taken in emergency last Monday, a drainage inserted in my groin area to drain infected lymph liquid. Infection level has gone down substantially now and liquid down to less than 100 ml per day and doctor expects it to go down to less than 50 ml per day in the next couole of days, at which point he will remove the drain tube. He said that there is a 5% chance it could happen again and would have to be drained again, but that this is not a chronic problem and once the lymph tissues connect together again and heal, the body will function normally again.

The ONE thing he warned me of is the massage. He says it's the worst thing you can do for a lymphocele.
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