Thumper,

1. There truly is no reason to just drain a cyst. Cysts in both the liver and kidneys will refill, usually within days or weeks. To get rid of a cyst in a minimally invasive manner, it is best to have them ablated or sclerosed, a somewhat similar procedure to drainage, but requiring a few more steps (insertion of contrast to ensure the cyst is not part of the collecting system (e.g connected to the rest of the kidney or liver collecting system), injection of lidoncaine to prevent pain from the next step, injection of absolute alcohol or a type of antibiotoc that will kill the cells lining the cyst walls completely, and then keeping that cyst (once drained and sclerosed) under negative pressure for a period of time (4-24 hours to keep the walls of the cyst pressed together to maximize the possibility that the cyst will collapse and never fill again. This will help prevent the cyst from reforming and prevent the pain from resurfacing.

I've had this procedure done multiple times in both my liver and kidney by an interventional radiologist and in consultation/in concert with my nephrologist. I found all sclerosing/ablations to be extremely effective at reducing pain, in some cases eliminating the pain entirely for an extended period of time.

Alas, as time goes on, new cysts continue for form and other cysts grow and replace the old, calcified cysts and the pain can recur. But the pain is from different cysts and can be in a different location and feel different (less painful, less intense, etc.).

Bottom line, simple draining doesn't generally accomplish much other than identify an offending cyst for futher treatment as it will generally refill if no other treatment is taken. A sclerosed or ablated cysts is generally (or in my case always) gone forever, never to return.

I am more than happy to give you much more information on the procedure and my expeirence. Send me an email via a private message and I'll be happy to email you the nitty gritty detail and/or call you with the information so we can talk in detail about the challenges of polycystic livers.

This can be done as on outpatient. All of my procedures were done as an inpatiens primarily because there is no additional cost to me to be an inpatient as a military hospital if they have a bed available and for the first few procedures, I was the guinea pig for the procedure and they weren't sure how I would respond and what the residual pain from the procuedure would be. In reality, the most pain relief I needed was Tylenol 3 after abalation (unless I was in severe pain going into the procedure to begin with and both of my kidneys and liver were rebelling). In all cases the relief from the procedure was dramatic and I was able to taper completely off the sustained release pain medication and use the immediate relief medication very sparingly until my liver or kidneys started to produce a new batch of cysts a few months to year later.

Hope my ramblings help. Please do contact me, I have extensive experience and can send you copies of my radiology reports that outline the entire procedure minute by minute that you can use to dicsuss the procedures with your doctors. I also have soem refernces for some South Korean studies that show the success rates on these procedures that will help you in making an informed decision as well.

Now it's on to answering you massive liver cyst question....

Ruth

When I was first diagnosed, they told me that one of my kidneys had a very large cyst covering more than half of it. But they also said they didn't want to do anything about it because it would cause unnecessary damage to the kidney. But my question is, would the procedures you talked about, Ruth, cause damage to the organ and also, would new cysts grow in the same place?

My fear would be that if I have the large cyst removed, smaller ones will grow in its place and become more complicated.

Alona,
As the disease progresses, whether you have large or small cyts present now, more cysts will inevitably develop, displacing, pushig out or even ruputuring the existing cysts. The only reason for the latter two procedures is to provided symptomatic pain relief that is permanent, meaning at least in my case, those sclerosed cysts will never return and never refill.

The cysts I had sclerosed are all gone; they appear as small calcifications in my liver or kidney. But other cysts were already forming and have long since taken their place. The pain, albeit from different cysts, is back. The sclerosing was a temporary procedure and gave me temporary relief (for some people with only one really big cyst it can give nearly permanant relief, but alas, I have hundreds if not thousands of cysts in my liver and each of my kidneys of all sizes, so I only get the temporary relief).

The procedure is designed to cause minimal if any damage to the organ itself (thus the use of the dye to ensure the cyst is intact and does not connect with the rest of the liver or kidney). If the cyst were to connect with the rest of the liver or kidney collection system, the procedure would have to be cancelled as you really do not want absolute alcohol coursing through the collecting system of the liver or kidneys, killing all the cells in its path. The only damage that this procedure has caused to my organs is a tiny amount of scar tissue ont he surface of the liver or kidney, making them just a little stickier than if no cyst had ever been pierced or ruptured and will probably make them just a little more difficult to remove when the time comes. But considering how may cysts on all my orgnas that have ruptured spontaneously over the years, these small pricks and "stickies" have caused minimal scar tisse at best and do not interfere with the organ function. Oh, and I have a tiny scar on the oustide where they inserted the catheter under local anesthesia.

It's the draining alone that is unnecessary and useless and can readily introduce bacteria into the cyst (my procedures have been done in a very sterile environment nearing the cleanliness of an operating room, not in somoene's office). The drained cysts will usually refill within hours. At times even when sclerosed, the cyst wall often still produces more fluid and in all but one case, the procedure was repeated twice within a 24 hour period to ensure the cells are well and truly dead; the flexible catheter remains in place for the full 24 hour period).

It sounds scary, but the pain relief was well worth the effort. I had the luxury of staying as an inpatient (military hospital, no extra cost as long as there's a bed available, which inevitably there was), but I know others who have had the procedure done as an outpatients as well.

Hope this helps clarify some.
Ruth

I have had several cysts drained a couple of years ago. I developed a serious infection in a couple of cysts in my kidneys and was in hospital for a long time as at first no one could work out what was making me so ill.

After almost 2 weeks the infection was found in the cysts of my kidneys. I then had a procedure to remove the fluid from within the infected cysts thus removing the infection. I was awake throughout the procedure and was not in any real discomfort.

In my case I was already in hospital due to the severity of the infection but I was told generally this procedure is carried out as an outpatient. It also relieved the pain I was experiencing.

I am here ofc presuming the procedure of draining the fluid will be the same.
Hope this has helped in some way.

You raise an excellent point, one that fortunately few people experience and I'm sorry to hear you've been trhough. Treating an infected cyst via drainage is very different from treating a cyst for symptomatic pain relief alone. If a cyst is infected and the antibiotics, given orally or via IV, don't manage to cross the cell membrane and get into and treat the infected cyst, it's essential to remove the infected material from that cyst in order remove and treat treat the infection. Ideally, the interventional radiologist who is performing the procedure will also inject some of the appropriate antibiotic directly into the drained cyst to treat the source of the infection, in addition to the systemic antibiotic you're getting orally or by IV. In the case of an infection, the goal isn't to remove the cyst entirely; it's simply to remove the infected tissue and cyst fluid to treat kidney infection so the body can heal.

Of course this procedure of removing the infected fluid from an infected cyst will reduce pain; it's the same concept as removing the fluid from an infected boil or other subsurface fluid filled sac. It also enabled the antibiotics you were on to work effectively, eliminating the infection, which must have been an incredible sense of relief.

There are times when drainage is appropriate and your experience with an infected cyst is one of them. But in general, for symptomatic pain relief in a standard cystic kidney with no infections, drainage is very temporary, the drained cyts refill quickly and any pain relief is transient at best.

There will always be those who are "abberations" to the rule and will find relief from the procedure, but in general, it's necessary to "kill off" the cyst wall cells with absolute alcohol or a specific type of antibiotic in order to prevent the cysts from reforming and refilling again.

Hope this helps clarify the issue...and I hope you never again experience another cyst infection!
Ruth

I am one who experienced frequent infections, presumably in cysts, prior to having a bilateral infection.
the procedure of draining the cyst was never discussed with me but it seems to make sense. my question is, since they never, despite all the tests, really diagnosed the problem, which cyst to drain?
with each hospitalization I was put on IV antibiotics and after 6 days sent home with a "fever of unknown origin" diagnosis.

sorry, make that a bilateral nephrectomy, not an infection (tho the infection may have been bilateral).

Helen
Sometimes doctors can identify an infected cyst via a CT scan, but not always. And sometimes the problems isn't actually an infected cyst, just a really bad kidney infection that ends up in areas of the kidney(s) that are not connected to the rest of the kidney collecting system because of other cysts (e.g. wayward cysts are blocking the exit route).

We just have some really strange anatomy!
Ruth

Hi!! I just had 9 cyst drained last monday! It's been a yr since the last time.. I was told by my nephrologist to get it done as i had some pretty larger cyst causing tons of pain. If your really uncomfortable you can ask your nephrologist to set you up with an appt for it to be done. Keep in mind there is some risk of infection and bleeding and also they do not put you under for this out patient procedure which i will not lie it's pretty painful anyways for me it is. They will use a needle and try to numb the kidneys as nuch as possible and give you a heavy antibiotic before procedure. When mine were just drained my dr that does them everytime was unbelieved that all of my cyst were full of blood except one almost all had bled thru and some was old blood and he said that would explain why i was in so much pain all the time and asked if i took asprin or was doing sports or got hit which no none of the above.. He does a ton of pkd cyst drainings and said he has never seen so many cyst filled with blood in his lifetime of doing this. He usually will see maybe one thats filled with blood. I have cyst ruptures and cyst that bled thru alot and he says that would explain the constant pain. It really only relieves the pain very short term as we are always getting new cyst and the old ones fill back up with fluid or guess in my case blood. Hope this helps

Also having this procedure done your taking a risk of losing some kidney function and building scar tissue!! Good Luck!

MY liver cyst was drained and then filled with alcohol and i was made to lie on my back for 5mins, then my side, stomach, other side and the my back again then alcohol drained this makes the sack shrink and shrivel. It was done under local and i was admitted the ngt b4 and got home in the evening about 10 hours after it was done. I was readmitted 3 days later but i had fluid on both my lungs a side affect cause the cyst that was drained was high up in my diaphram. And yes it has taken some of the pain away and the popping as the cyst was rubbing up and down my rib and when i was sitting it was like my rib was popping over.

Jamm,
My interventional radiologist discovered a wonderful intermediary step between drainage and absolute alcohol called LIDOCAINE! He injects lidocaine (an amount equivalent to 20% of the original amount of the cyst fluid) into the cyst after the contrast is drained, and then you roll around on the table (assisted of course, because you're under the influence of Versed and Fentanyl), for about 5 minutes on each side to numb the walls of the cysts. It dramatically reduces any pain that may be involved with the adminstration of alcohol (I've only had the procedure done this way so I have nothing to compare it to, but I have talked to others who had the procedure done without the lidocaine step and am very thankful for my very conscientious radiologist!). Then he drains the lidocaine and injects the alcohol and there's more rolling around (~10 minutes each side for the lidocaine). In my case I was admitted the morning of the procedure, the put in the IV, did their magic, kept me overnight (minimal pain meds needed; the catheter remained in overnight), then repeated the procedure the next morning to ensure the cyst was well and truly gone and then I was sent home. All the cysts remained gone for good. I suspect the fact that both interventional radiologists at the hospital have PKD in their family probably contributed to their interest in the procedure and determination to make this the best possible experience for me as possible (well, the least unpleasant).

I have some very large cysts that are much higher up and closer to my lungs, but there is absolutely no way my doctors were going to attempt to reach them; we all agreed the risk is too high, both to my liver and lungs. My liver is so cystic there are also some cysts deeper in the liver, but again, because the liver are so vascular it's too risky to go after more than just the cysts that are basically on the surface.

Unfortunately, I've since developed an anaphylactic reaction to CT IV contrast despite premedication with steroids, so sclerosing and ablation are no longer options for me, even though the contrast ideally stays within the cyst itself)

I'm truly sorry they tried your higher cysts and you ended up with fluid in your lungs. It takes a lot of team work between your nephrologist and interventional radiologist and YOU to decide exactly what cysts make good targets and what cysts should just be left alone. Bigger is not always better; there are some locations such as near the lungs or some other organs (e.g. heart) that just need to be considered off limits due to the risk of damage to other organs.

I wish you well and hope you find relief with the sclerosing and ablation. Have you considered ressection as a possible option as well? Mayo MN (Dr. Torres for an evaluation, Dr. Nagorney for the actual surgery) are experts on the procedure, so you may want to consider a consultation to them if your liver has some no cystic portions. Dr. Torres will often review the CT and MRI scans for PKD and PLD patients who are possible candidates for liver ressection at no cost to the patients, so it's worth a phone call (he's the Chief of Nephrology at Mayo MN).

I know how much this liver cyst issue stinks (among the less colorful words I've used over the years). Hopefully the vast majority of you just have a few liver cysts and at most only one or two become symptomatic in your lifetime, if that. I sure wouldn't wish my experience on anyone!

On that note, I wish you all a very good weekend!
Ruth

I would like to thank all who responded. I appreciate the information that you all provided. Due to the amount of pain I have been experiencing I will be discussing this with my nepo next month.

Thank you again

Greg B.

Ruth,
Is "ablation" or "sclerosed" the same as fenestration?
My latest US showed few 9 cm. cysts pressing on my stomach which may explain my nausea and vomiting after normal size meals over past 4 years. Doc recommends fenestration. Is that what you had done to ensure permanent relief by preventing re growth?

How are you doing these days? I know you await a double transplant. It must be so agonizingly awful for you right now. If I don't hear frm you, I completely understand.
Take care of yourself,
Wishing you the best,
Jess