LPenrod,
It depends on what type of cyst abation you're talking about: symptomatic targeted cyst sclerosing/ablation (same procedure), cyst fenestration/deroofing/marsupialization (different names for the same basic proceduce that can be done laparscopically or via open surgery) or just a cyst ablation/sclerosing because of a CT-detected infected cyst (a completely different story that involves labs, antibiotics, drains, etc.)

I've had the targeted cyst sclersoing for symptomatic, pinpoint pain, pain I could either put my finger on and say it hurts right here, or in the case of my liver (I have the massive liver cyst presentation), a couple of cysts that were bracketing the stomach and preventing me from eating and a large cyst on a lower edge of the liver and the adjacent large kidney cyst (despite their size, 10 and 7 cm respectively, I was still able to point to the pain with a finger, not my entire hand). I had the procedure done a total of 5 or 6 times, and only twice did the interventional radiologist target more than one cyst during the same procedure: once was the two cysts bracketing my stomach and the last was the liver and adjacent liver cysts. Otherwise it was one cyst and one cyst only. This is a targeted pain management procedure, and was done for pinpoint pain. It wasn't limited because they were running short of time or equipment (my care is provided by the military and is free to me), but because there is no evidence that a wild, "willy nilly hit a bunch of the largest cysts and do a lot at one " approach does anything other than make money for the doctor (or in my case, just take a lot of time and cause more adhesions that the transplant surgeons are worried about--at least in the liver, which is a remove and replace operation).

In all but one instance my cysts were sclerosed twice in 24 hours (the flexible catheter that was used was left in place overnight; twice in 24 hours has been proven to dramatically increase the success of the procedure) and in virtually all cases the cysts are now small calcifications in the applicable organs (even the one that was only done once...that one I made a scheduling error and discovered the second day was the same date my father died and I wasn't emotionally prepared to deal with PKD, cysts, more doctors and the anniversary of my father's death at the same time (lesson learned when scheduling appointments). Without fail the relief was palpable immediately after the procedure and I rarely needed any pain medication afterwards except for my sustained release meds which I still needed to take, but was able to start tapering down and in fact entirely off after each liver cyst sclerosing).

My interventional radiology also did a lot of research to find and develop the right procedure that would reduce or entirely eliminate the pain that is often associated with cyst ablation/sclerosing (mine were all done using the latter term and using absolute alcohol...and had the critical step of using lidocaine BEFORE the administration of the alcohol) so I never had any significant pain during the procedure. Getting the IV placed was probably the worst part of the ordeal (I have really bad veins and there are only a couple of people in the hospital who can place an IV...the interventional radiologist actually put one in my neck (not a central line, just an IV, but using ultrasound guidance) because he couldn't stand watching the nurse try to stick me for the umpteenth time.

Cyst sclersoing is NOT meant for continuous treatment, something to be done every few weeks indefinitely. While I had it done 5 or 6 times, that was over the course of three years and only for very targeted symtompatic pain relief. Only targeting the largest cysts is not necessarily effective either; in most cases, my targets were smaller cysts, but ones I could point to where the pain was and by sclerosing that cyst, I got immediate relief (or in the case of the ones bracketing my stomach, was immediately able to eat solid foods again). In addition, at least with the liver, there are depths and areas that no one should be going, not near the lungs (where my large cysts are now; there's too much of a risk of causing a puncture to the lung or blood vessel in the area) or deep in the liver where the large blood vessels reside.

With both the kidney and liver, it's essential to ensure the cyst is intact and not part of any collecting system or has a leak of its own. This is done using a small amount of CT IV contrast, injected into the cysts and then checked via fluroscopy (real time x-ray) to confirm the targeted cyst is NOT connected to the collecting system or otherwise leaking. If this step is skipped and the sclerosing agent is injected with no confirmation, the alcohol or antibiotic (usually absolute alcohol is used) can get into the kidney or liver itself and cause untold damage. The good news about the contrast: these targeted cysts are usually intact (but this MUST be confirmed and not assumed regardless where the cyst is located) and the contrast can be fully drained after the confirmation is made that the cyst is intact, so you're not generally exposed to the contrast itself. The bad news: If you have a bonafide allergy to the CT IV contract (or any iodinated contrast) (a real allergy versus one you've told the doctors so they will never consider risking your kidney function with the contrast), you WILL either need to be premedicated with steriods 12 and 2 hours prior to the procedure and/or may need to seriously consider not having the procedure at all. I had a previous adverse reaction to the CT IV contrast during a CT (shortness of breath and chest pains, but not severe) so I was always premedicated with methylprednilisone (steroid) and generally felt like superwoman going into the procedure. However, after I had an anaphalyactic reaction to the CT IV contrast following a CT with contrast (a code was called although I was breathing lightly, my pulse was below 30, BP very low and then later spiked wildly to 210/180; spent 24 hours in the ICU and my pulse never did get above 30), my medical team and I jointly ruled out any more sclerosings at all. No one, including me, is willing to risk another code or an even worse reaction for the sake of some pain relief (I cannot have the iothalmate clearance test for GFR either, the test considered the gold standard for kidney fucntion, as it too used an iodinated contrast that is kidney friendly; my life is too valuable to risk coding again!). At the time, all the remaining targets were considered "out of range" and in areas my doctors would not consider going anyhow (too close to my lungs or heart).

As for the other surgical option (and yes, sclerosing is considered "out patient surgery" and leaves a scar from the catheter insertion, both outside and inside with minor adhesions), those are in the realm of a surgeon's expertise and I have not and cannot travel down that path (my presentation does not lend itself to fenestrations of any type, kidney or liver). They generally involve removing the tops of all the visible and accessible cysts, which prevents them from refilling and also signficantly shrinks the size and volume of the kidney as a result. They also need to be done in the hands of a very skilled and experienced surgeon who has extensive expeirence wtih PKD; your average urological surgeon is not someone to entrust your fragile kidneys with no matter how much they claim to be capable of doing this (yes, they may be capable, but how many have they actually done, what is their success rate and do they specialize in this surgery; all too many people have ended up with mangled kidneys and more pain as the result of well-inteded surgeons who got in over their heads). I do know the results are much longer lasting, it can be done laparascopically (and robotically for more precison) and a renal denervation can be done at the same time to dramatically reduce your overall kidney pain, ideally permanently. Don't worry about knowing if you have an infection, etc.; you get instructions for signs and symptoms and how to check for those despite having no feeling in your kidney (just as tranpslant patients have no feeling in their transplant).

There is yet another procedure for pain relief that is less known as it doesn't directly involve surgery on the kidneys themself. I know a couple of patients who have gone through the procedure with outstanding, lasting results (4+ years and holding). It's called video-assisted thorascopic splanchic sypathectomy. Mayo (Rochester) is currently doing a clinical trial on the effectiveness (no, they won't pay for your surgery and I don't think they even pay for the visits). It involves a thoracic surgeon accessing the sympathetic renal nerves in the chest cavity where they come out of the spine between the 10th and 12th thoracic vertebrae and essentially stripping them (these are the nerves that carry the pain signals, not nerves that conduct or tell an organ or muscle how to perform their function) and thus cut off the pain signal from the kidneys to the brain without affecting kidney function at all. There have been a number of studies, especially in the UK, using this procedure to reduce blood pressure in patients who are resistant to most medications (not sure it would work on a PKD patient as the cause of our hypertension is a bit different than most), but I KNOW it does work on PKD patients. My doctor has 2 patients who have had this surgery and after 4 years have NO PAIN at all (one was on 80 mg of OxyContin twice daily before her surgery and continues to be pain free; the other is 2 years out from surgery and is still pain free, from both the incison sites (one on each side below the bra line and the kidneys...to access the nerves for each kidney a couple of small incisions are needed on each side...video assissited is thoracic terminilogy for laparascopic). I am waiting to here back from a Mayo researcher on whether the procedure is also effective for liver pain as well; they've had one patient undergo the surgery for liver pain up there but alas there are no studies whatsoever that talk about the liver and I'm NOT going to be the guinea pig on that study....the liver is too precious and we don't have any backup options or dialysis for it if something goes wrong.

I hope my mini novel helps clarify the procedures for you. It takes a very good interventional radiologist to perform the sclerosings, although some basic radiologists and even nephrologist will claim they can perform the procedure themselves (trust me, they can't! They don't have the training, the expertise, or the the access and knowledge how to work and use the materials and equipment needed). BTW, I was under conscious sedation with Versed and Fentanyl during every procedure, so this wasn't something that was done just with a local (yes, a local was used and then given a bit deeper and deeper after the initial one worked so I really did not have pain); it was a serious procedure and I was very well cared for.

If you would like more information or to discuss this further, please feel free to ask any questions. I have some links to research done by the South Koreans (I had my first procedures in 2006 so it wasn't all that common here in the US) and if you have an interventional radiologist who needs more information about this, I will be happy to contact mine and ask if I can use him again as a reference (I don't want to just abuse the privlege, but I am confident he'll talk with any doctor who calls; he's great about that). I also have the full radiology report from my last procedure, to include all fluids used (which will help show how much contrast, lidocaine and alcohol was used, which is determined by how much fluid was in the cyst to begin with), as well as how much time was spent being rolled on the table (with assistance) to coat the entire cyst with the lidocaine and later the alcohol to ensure complete coverage. I have those in an actual email, so if you messeage me an email address, I'll be happy to send it to you (please don't put your email in a post unless you want to get spam galore!).

I wish you all the best and hope in the mean time your pain is being managed effectively (I had pain medication long before cyst sclerosing was even considered, even though it wasn't the heavy-duty sustained release stuff, it was Percocet (I'm pretty immune to the rest) and was already taking it as needed when this option was raised).

Gentle hugs,
Ruth

Here is my specific situation...

I have a coronary artery problem that causes them to spasm. I have had two heart attacks from it when I was 19 and 24 (I'm 43 now). The second heart attack happened during a 6 week period when I was slowly being taken off the heart medicine that controls it. The drug is Cardizem, a calcium-channel blocker.

Calcuim-channel blockers are a problem for PKD patients because the cause cysts to grow faster. Oh yea for me...

So I have lots of large cysts especially on the surface of my kidneys.

I have got to the point that I can rupture a cyst by bending over, picking up something a little heavy, wrestling with the kids and tons of other ways. I am starting to feel so feeble. I expressed this to my doctor and that was when he mentioned that we might want to consider ablation.

Occasionally I can pinpoint a pain, but more often, it is fairly broad, but definitely kidney pain. I do have a few cysts on my liver, but they have been relatively small and as far as I know, they haven't caused me any problems.

I'm so sorry to hear about the heart attacks. I just can't imagine all you've been through. I'm curious as to why your doctors decide to take you off the Cardizem since it controls your symptoms when they could have ADDED an ACE inhibitor or ARB to your treatment plan and thus treated both of your conditions without causing you heart damage. To the best of my knowledge there is no proof that calcium channel blockers CAUSE cysts to grow faster (there basically no proof that anything causes the kidney cysts to grow faster other than genetics, just a lot of supposition). It's just that ACE inhibitors and ARBs have a renal protective effect and MAY help reduce the growth rate of cysts (yet to be proven...the HALT PKD study is still ongoing).

It sounds like ablation/sclerosing might be an option for you, but with the vast number of cysts you have, you would need to go through the process a vast number of times in a short period of time, far more than any interventional radiologist who has their patient's best interest in mind (and not their pocketbook) should be willing to perform.

When I say I've had the sclerosing done 5 times, that was only to target a total of 7 cysts. My interventional radiologist was quite adament up front that he would absolutely not consider going in and doing this over and over and over again for either pain relief (unless I could put my finger on the pain and that was after I had signficant pain the didn't respond to traditional treatment for an extended period of time) nor would he use the procedure to reduce the size of the kidneys or just reduce the number of cysts. He was quite honest about if you're doing that over and over and over again, versus just periodic symptomatic pain management (and my 5 sclerosings were over the course of 3 years) you're getting into the realm of surgery, minus the surgeon. And that is NOT what ablation/sclerosing is meant to do; it's a single cyst procedure each and every time (and involves the risk of exposure to medications for sedation, the possibility of infection, etc., each and every time, so it's not to be taken lightly).

Cyst fenestration/deroofing (laparascopic)with a skilled surgeon (if general anesthesia is a reasonable option with your coronary artery condition) would be a much more reasonable option and would treat all of the accessible cysts in and on each kidney and only need to be done once for each kidney (and both kidneys can be done at the same time depending on the surgeon). This would dramatically reduce the number of cysts that could rupture by deroofing them and thus they would be unable to refill (there is no guarantee with sclerosing and not every interventional radiologist uses the same procedure...some call the procedure sclerosing yet use as little as 2 cc's of alcohol, which will do absolutely nothing other than kill a cell or two). In addition, fenestration can target cysts smaller than 5 cm whereas sclerosing generally only targets the larger cysts (and those aren't necessarily the ones that are rupturing or even hurting...despite their size, any cyst can rupture at any time).

Quite frankly, I would look at the surgery rather than ablation/sclerosing. Yes, it's more involved, but it's also much more effective, has a much better, long-term track record, and will reach so many more cysts than ablation/sclerosing ever could. I suspect you will get much greater relief, based on the description of your symptoms and at the same time, they will treat you with antibiotics to ward off any infection (and may well end up draining and deroofing any infected cyst if one actually exists).

BTW, it sounds like your doctor has tunnel vision again...ablation is symptomatic treatment for a target cyst or two. If he was concerned about a true cyst infection and had done his due diligence and indentified the infected cyst, ablation/sclerosing of that cyst would be appropriate. But for vast number of cysts that are causing ruptures and wide spread pain, a surgical approach with fenestration is more appropriate.

Best wishes,
Ruth

I think I used the wrong term when I used ablation.

The part of it that I remember the doctor describing is a surgeion going in laprascopically and cutting out a portion of the external cysts. Maybe that is what you are describing.

I am on an ACE as my blood pressure has been going up. It had been working nicely until my last hospital visit.

I am going to butcher this explaination... I could be really off base with this... It think the explanation of the problem with calcium channel blockers has to do with the amount of calcium in the cyst and the amount of calcium outside the cyst. The fluids on both sides want to be in equilibrium and the calcium channel blocker partially prevents it. Fluids flow into the cyst to draw the calcium in, but due to the medicine, little calcium passes into the cyst and the cycle continues. I remember seeing the research and it made perfect sense when I saw it. I think I have it at home somewhere. I will try to find it. It may only be what the researchers suspect is going on. And I may remember it totally wrong. But the fact that I am on the drug and can't come off keeps coming up.

The surgery your doctor mention is called fenestration, deroofing or marsupialization (same name, same basic surgery). And yes, it involves removing the tops of all accessible cysts so they drain and do not refill. The surgeon is not limited to only the external cysts and quite frankly, if he were to only remove the tops of the external cysts, he's just going to create a new line of external cysts that are going to cause you problems in short order (keep in mind that your kidneys have hundreds of cysts in each organ, so while you don't want your kidney butchered, you also don't want to go through an invasive surgical procedure for a few external cysts if the surgeon is skilled and can access more cysts (and possibly denervate the kidney at the same time, removing pain as an issue altogether...there are plenty of other ways to determine if you have a kidney infection; keep in mind that all transplants are denervated, but patients have no problem with determining if/when they have an infection).

As for the calcium channel blockers, I agree they are not the ideal BP medication (for pre-transplant patients; they are ideal for post transplant where ACE inhibitors and ARBs actually decrease kidney fucntion and GFR by up to 34%), but you are again, not the average person and are way more than just a set of kidneys! Doctors, especially those involved in research, tend to focus exclusively on their one area of study, to the exclusion of the rest of the body, and as a result, may well have caused you irreparable heart damage by insisting that only an ACE inhibitor be used (2 heart attacks at such a young age cannot possibly be healthy). Sometimes too much research can be dangerous just as dangerous as too little, especially when it is applied without regard to the rest of the body or in isolation and with the expectation that that one study will be the be all, end all of research on a disease. There are a large number of PKD patients who fare just fine on calcium channel blockers for their entire life, so it's not the utter danger the researcher or your doctor made it out to be.

The major issue with the cysts now appears to be cloride channels, not calcium (in fact it appears some calcium channel blockers may actually have a beneficial impact in cases, but the mainstream research is tunnel vision focused on ACEI and ARBs to the point they refuse to accept any alternatives at all; they're also hell bent on using the CRISP results as the "be all end all" criteria for proving the effectiveness of drug studies despite two utter failures to prove its efficacy as a measure of effectiveness (images showed reduction in cysts while labs showed dramatic decline in kidney function....sirolimus). And while there are studies have shown that the ACE inhibitors and ARBs are better BP medications for pre-transplant PKD patients because of their renal protective effects (an effect the other BP medications do not have), that effect actually becomes a negative as the kidneys get deeper into failure (around the 20% point) and can actually exacerbate renal failure (a fact few nephrologists know let alone tell their patients). In addition, the studies that were done comparing all the BP medications did not look at cyst growth (the capability did not exist at the time) but simply looked at kidney function using creatinine, a very unreliable and ineffective measure of long term PKD kidney function that doesn't take into account whether you are teetering on that edge of going downhill next week or next year or never. So many of the patients on calcium channel blockers or beta blockers may well have been on that downward slide long before they started the study, but because a noticeable increase in creatinine is not seen until 50% of kidney function is lost, no one knew they had already slipped over the edge. In addition, that study occured well over 15 years old and a heck of a lot of research, to include finding the genes, has occured since then.

Anyhow, yes, it is the surgical fenestration your doctor is recommending and yes, there are a number of success stories out there as well. But you need a very good, skilled surgeon (the only one I know of is on Long Island and there are some on the west cost in the LA region...I'm sure there are some in the midwest as well, but I wouldn't just allow any urological surgeon to operate on my kidneys). It takes skill, expertise, experience and time to do this right. In the right hands, this surgery can work wonders. In the wrong hands, it can cause a disaster. So please take your time and do your research and find a surgeon with expertise (Mayo Rochester has experience as well).

Good luck,
Ruth

I found my research hand-out. Is there a way to attach a PDF?

I don't think that you can attach a PDF file to Daily strength, is there any other way you could get it here? Thanks for trying so very hard to explain your situation, I know it's difficult at best. Good luck

lots of love,
Norma....

Let's try this: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B07SRt9vODSfNGNiN2JjMjQtMGVjOS00ZTkwLWJkNDctYTRjYWY1MDNjYjEz&hl=en&authkey=COuSpXA

Towards the end is the part I was talking about in regards to Cacium Channel Blockers I know that often the outcome in humans is not the same as in animals. But so far it has been true for me.

Nope, didn't work, said "user not found" try again, and again!

I actually had this done four times. It was successful for me each time. I had to stay in the hospital for about four days each time and I got about a year of pain free with the kidney working better for the better part of each year. I will warn you, it is quite painful after surgery because the kidney has been roughed up quite a bit. Actually having my kidney removed was an easier surgery because obviously it wasn't there after surgery to hurt like I had experienced. I would have done the deroofing again but the surgeon was not able to get in there again due to scar tissue. The surgeon I used is C. Blake Johnson, he also performed my nephrectomy and apparently he is an incredible surgeon. All the doctors I have seen since my surgery are always shocked with the size of the incisions compared to the size of the kidney that he removed. He operates in Salt Lake City.
Hope this helps.