salesian
08-04-2006, 04:50 AM
would be grateful any advice. - my left kidney not working. right kidney function 50% which has 9cm single cyst. cyst drained 3 times refills with blood within days.surgeon suggesting keyhole surgery to remove cyst but warning that if any problems incurred could result in dialysis which has terrified me and not sure if cyst will get bigger or kidney failure increase if i dont do anything. wondered whether anyone in similar position
feelbad
08-07-2006, 10:02 AM
just curious here but when left alone,has this cyst continued to enlarge or has it stayed pretty much the same?the only reason I am asking is that I have polycystic kidney disease and have some really amazingly huge cysts in both kidneys(my biggest so far is currently 9.55cms),the reason they have not actually even attempted an aspiration like they did for your single cyst is for the same thing that keeps happening with yours,it would just continue to refill after it was actually aspirated.so i am wondering just why your doc continues to want to keep doing this when he already knows just what the end result will be.not to mention the risks he is placing on you everytinme he goes back into your kidney.you know what I mean?
now from what you just mentioned about this new surgery he wants to do on your kidney to remove it,given the huge risks you mentuioned,would it really be worth the risks to you at this point?i mean what happens if it is left alone?has he mentioned that to you?is the cyst expected to actually grow here or what?I am just wondering since you already have a non functioning kidney(whats that from anyways,has he told you this?)you need to make the other last as long as possible but by actually doing this surgery it sounds like this would most likely make it "go" at a much faster rate than if you just did nothing?am i right or way off base here?
quite honestly for just what you have stated here,it may be better for you in the long run to maybe just do nothing?this is kind of where I am at currently with my poycystic disease.there really is nothing I can do about the growth of my cysts at this point despite the fact that they have now grown to around 19cms in size and have just recently 'shifted" out of the normal spots they are supposed to be in.this is causing me alot of pain right now as one is actually running outside the front ribcage and down thru the hip area and the L one is running from the abdominal area,between the hip and bottom rib(that part really sucks when I sit down) and on up to just behind my L lung.and all I can do is wait til my labs get to the point where I will need to have a new kidney.amazingly,all of my labs are still within the normal ranges which honestly just bows my mind when I look at the films of my last ultrasound as they are both just loaded with big and small globs of cysts both inside and outside both kidneys.
I am really wondering if by just doing nothing you may have a much easier time and better quality of life right now instead of actually having that surgey done which could also bring along alot of complications to have to deal with and the possibility of your last remaining function going into the dumper.you mat have a much longer time with the kidney by doing absolutely nothing.I know its hard to not want to try and actually "do" anything but I have been living with mine now for (well diagnosed anyway,theyhad been like this for a very long time but i just didn;t know it til my son became deathly ill from it and I had to be tested for it)like eight? years now? an there really has been nothing to really 'do" to fight it as it goes at its own pace.alli can do is just watch my BPswhcih thankfully have been really good so far.its kind of all up to you as far as what you want for yourself,but sometimes the best possible treatment is not treating something.
you need to just weigh the pros and cons here really and follow your gut feelings.If pain is an issue,start seeing a good pain doc.mine has been a lifesaver for me.i also suffer with the after effects of spinal cord injury as well as the kidney crap so my needs are bit more than yours would be but a good pain doc is really priceless sometimes.just some thoughts.i certainly hope things get better for you or just stabilize for you anyways.let me know how you are doing.good luck to you salesian,marcia
salesian
08-22-2006, 03:05 PM
dear marcia many thanks your helpful response. bit more of my history is that i was diagnosed with prostate cancer in 1999 and underwent course of radiotherapy. told by consultant left kidney not working due damage from radiotherapy. they found left ureter blocked throughout following this treatment which was stented for six months but no improvement. then diagnosed with high blood pressure with tests revealing right kidney function reduced to 50% with large single cyst. initialy cyst was 2.6cm but has now increased to 9cms. reason for aspirations was that i was suffering pelvic and penus pain and they were trying to establish whether cyst was the cause. after one of the aspirations pain vanished for about a week and then returned. pain is my main problem if i wasnt suffering i would leave everything on hold as you suggested. seeing top uk surgeon on 8 sept with all my scans etc hoping he can find solution.best regards