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POLYCYSTIC LIVER DISEASE LIVER RESECTION |
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POLYCYSTIC LIVER DISEASE PLD For relief of extensive liver cysts these are surgical procedures
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LIVER RESECTION
The greatest success for symptom relief has been from liver resections with fenestration done at the Mayo Clinic in Rochester
MN. As our cystic livers continue to grow, some type of procedure is needed to rid the body of this huge cystic mass. A liver resection is one such surgery. For the most part, these liver resections performed by Dr. Nagorney are curative and there is very little liver cyst re-growth seen. In order to be a candidate for a liver resection there must two segments
of the liver that are relatively cyst free.
The liver contains (8) eight portions. Following the liver resection, the veins that feed the liver remnant must remain open allowing for a good
nourishing blood flow. A few have reported receiving a bloodless liver resection in North Carolina. Here are some articles about liver resection.
PLD Liver resection Chinese experience
PLD liver resection treatment of choice
PLD liver resection Alberta teaching hospital
PLD liver resection Mayo PLD liver resection Dr. Nagorney
PLD liver resection 1995 Dr. Nagorney
Some have sent their MRI's or CT scans to the Mayo clinic for evaluation prior to going there for their surgery. Ideally make an appointment to be evaluated by Dr. V. Torres at the Mayo Clinic in Rochester Minnesota USA. Once it has been established that one is a candidate for a liver resection then there remains several choices. Either one can go to the Mayo, be evaluated for surgery and return at a later date for a liver resection surgery or one can be scheduled for surgery for the following day and evaluated the day before. This is what I chose to do. My stay in the hospital was about two weeks. I would have remained in town for about a week or more following my hospital discharge from the liver resection surgery. There are several hotels rooms, some that provide breakfast and all provide free shuttle service to the Mayo Clinics. Drains will be left in place post operatively to allow for the fluid from the removed segments of the liver. If one is not a candidate for a liver resection a Liver Transplant is another option . I have heard of a few instances of bloodless liver resections and bloodless liver transplants being performed.
With extensive liver cysts if one can manage a trip to the Mayo Clinic in Rochester Minnesota USA - this has the best chance for finding the correct procedure with an established success rate for halting growth and eliminating the mass effect from liver cystic disease. In the hands of the experienced liver resection surgeon, D M Nagorney M.D., amazing results are achieved. If one happens to live in the Netherlands, Belgium, Austria, UK, Singapore, France, or Greece, liver transplant may present the better outcome. If one lives in Japan, a hepatic artery ablation technique developed by Dr. Ubara may hold the key to improving quality of life with Polycystic Liver Disease.
A hepatic liver resection with fenestration does require a very meticulous knowledgeable surgeon willing to painstakingly flip the liver around to eliminate all visible liver cysts on the liver remnant. There must be an adequate blood flow to the remaining liver once the cystic segments have been eliminated.
Some worldwide centers are attempting laparoscopic fenestration for symptomatic pain relief. This treatment is reserved for early polycystic liver disease with a few dominant exophytic (along the exterior surface of the liver) liver cysts that bulge outward. If there are liver cysts throughout the liver, this procedure is not very helpful. It is an equally long procedure requiring surgical insertion of liver drains. The same is true of a liver resection. The difference is a liver resection can be curative whereas a laparoscopic fenestration is a temporary fix for an ongoing problem.
I have experienced a liver resection to be curative, especially when followed by a regimen to diminish recurrence of future liver cysts. Octreotide, a somatostatin analogue, holds hope for a possible future medication to diminish liver cyst growth. I also had my ovaries and uterus removed at the same time as my liver resection surgery. The ovaries were removed because of a huge developing fibroid and both ovarian and breast cancer run in my family.
There are major medication differences between liver resection and liver transplant. With liver resection no further medications are required. Liver transplant patients require immunosuppressive drugs. Steroids have their own complications, such as osteoporosis and a lower tolerance to infections. For more information on steroid induced osteoporosis and on kidney disease and bone disease.
I have heard from PKD’rs who have had their resections performed by someone other than Dr. Nagorney (or someone who trained with him). Their results have been less than optimal. The reason for this is that Dr. Nagorney has performed so many more of these surgeries for polycystic liver disease than anyone else in the world. He is so very experienced and, also, very, very talented. The only surgeries he performs are liver resections. He does multiple liver resection surgeries every week of the year. Dr. Nagorney is an exclusively dedicated liver resection surgeon. He does nothing else. I am hopeful that eventually there will be a fellowship-training program for surgeons who wish to perform liver resections.
With laparoscopic fenestration, multiple repeat surgeries may need to be performed. The visible liver cysts are opened and drained through a small opening in the abdomen that allows for the passage of tools to slice open about 200 of visible liver cysts along the external edges. Cysts deeper within the liver are not accessible for fenestration (there are many, many more cysts deeper in the liver than appear along the surface). This is why this procedure is not as successful as one might hope. Laparoscopic liver fenestration is a procedure that is performed early in the course of this disease, before the liver has accumulated so very many cysts, and this procedure may have to be repeated when there is a worsening of symptoms as the deeper cysts grow in size and number. Even when performed by the best of surgeons, 25% of patients who have laparoscopic fenestration need repeat surgery within two years or eventually will need a liver resection or a liver transplant. Whereas liver resection or liver transplant gives permanent relief for PLD patients.
From Singapore YM Tan 2004 Highly symptomatic APLD
A combination of liver resection-fenestration is suitable for those with a DIFFUSE (most of us) cyst pattern where grossly affected segments are resected in combination with fenestration to allow for reduction in liver size.
From China 2004 Yang GS
Highly symptomatic individuals with massive PLD benefit from a combined liver resection and fenestration with acceptable risk.
From Singapore 2002 Tan YM
Alleviation of symptoms can be achieved with the laparoscopic approach for SOLITARY SIMPLE liver cysts but not for polycystic liver disease
From Singapore 2002 Tan YM
Conservative approaches like percutaneous aspiration or cyst fenestration are associated with high recurrence rates. Conversely, liver resection and hepatectomy with orthotopic liver transplantation. Good long-term relief of symptoms can be achieved with the correct procedure.
From Mayo USA Nagorney DM 1993
Liver resection cyst fenestration PLD
CONCLUSIONS: Selected patients with severe symptomatic polycystic liver disease and favorable anatomy benefit from liver resection and fenestration with acceptable morbidity and mortality. The extent of hepatic resection and fenestration is important for the long-term effectiveness of this procedure.
31 patients liver resection and fenestration 1985 - 1993. Mean liver volume was 9357 mL before and 3567 mL after surgery. There was one death from postoperative intracerebral (within the brain) bleed. Eighteen patients experienced complications: transient pleural effusions or transient ascites. Twenty-eight of 29 surviving patients with adequate follow-up have experienced immediate and sustained relief of symptoms and improvement in quality of life.
After median follow-up of 2.4 years (range, 0.2 to 7.9 years), most patients have not had clinically significant enlargement of the liver. Sequential computed tomography scans before and after surgery suggest that hepatic enlargement in the age range of the patients in the study mainly resulted from the expansion of existing cysts rather than from the development of new cysts.
From Italy 1994 Morino M
The best indications for laparoscopic fenestration seem to be solitary cyst and PLD characterized by large cysts mainly located on the liver surface (type 1), whereas PLD characterized by numerous small cysts all over the liver (type 2) should be considered a contraindication to laparoscopic fenestration.
From Brussels Belgium 1997 Gigot JF
Fenestration may not be the most appropriate operation for long-term management of all types of APLD.
The procedure can be performed laparoscopically in type I APLD. A longer follow-up period is mandatory in type II APLD, to confirm the usefulness of the fenestration procedure. In type III APLD, significant disease progression was observed in 40% of the patients during long-term follow-up.
From Brussels Belgium 2001 Gigot JF
Patients with polycystic liver disease are more prone to late cyst recurrence.
In the six patients with multicystic liver disease, one developed disease-related cyst progression (17%) and required reoperation. One of the two patients with type I polycystic liver disease (50%) developed asymptomatic disease-related cyst progression. When patients are carefully selected and a proper surgical technique is employed, excellent long-term results with a low morbidity rate can be achieved in patients with congenital liver cysts.
From 2007
Liver cyst aspiration does not provide definitive therapy
What makes liver cysts stop oozing fluid?
Liver resection surgery places drains to provide an exit for the cyst fluid. There are many reasons for this. Following my liver resection I had drains, somatostatin, Prilosec, and dietary changes. Then one day the liver drain fluid just stopped and the drains were removed. Since, I have had no re-growth of my liver cysts.
Liver cysts begin to exude fluid into the cyst cavity every time we eat. A natural body molecule called secretin, responds to an acid pH of the stomach contents, by expanding and filling liver cysts with fluid. This is experienced as bloating, pain and discomfort following a meal. It is especially pronounced if bread, cheese, tomatoes, starches, yeast, sugars, alcohol, and animal proteins are eaten. Others have noticed diminished symptoms with Prilosec, Nexium, and other H2 blocking agents. If I indulge in something that triggers these symptoms I will squeeze the juice of a lemon into hot water.
In liver cysts, Cyclic AMP responds to secretin by expanding liver cysts. Cyclic AMP responds to vasopressin by expanding kidney cysts. Caffeine stimulates Cyclic AMP. Many have reported an increase in pain when drinking coffee, chocolate, colas, and tea.
FREQUENTLY ASKED QUESTIONS |
WHAT ARE THE PROS AND CONS FOR A LIVER RESECTION? AND WHAT QUESTIONS SHOULD I ASK MY SURGEON?
Liver Resection Con's
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Explain more about hormone receptors within our cystic livers
If you can picture a cyst like a ball with little tendrils all around. These tendrils have hormone receptors. It is like a puzzle piece. Only a certain piece will fit the very end of the tendril. These tendrils like the structure of hormones very much. Any molecule which comes along and faintly resembles a hormone, then these tendrils will latch onto it and never let go. It has to look very similar to a hormone such as estrogen. It could be a false estrogen or a false androgen. The liver hormone receptor doesn't care. It fits and that's all that's important for the liver hormone receptor. Once this connection is made then this stimulates the growth and production of more liver cysts.
This is my understanding. Someone may have a different one?
When our livers begin to enlarge, then the metabolism of estrogen and androgen end products is sluggish. There are two things going on. The liver responds to estrogen and estrogen like molecules by growing more liver cysts and the liver simultaneously cannot get rid of the waste products or the end products of estrogen metabolism so the level of body hormones rise causing liver cysts to grow.
What makes PLD polycystic liver disease " severe"?
According to a PLD lecture, severity of PLD polycystic liver disease is related to the size of the cystic liver. The symptoms come from the massive size of a cystic liver compressing blood vessels and organs. The most common reported symptom is pain. Several examples were given of severe PLD polycystic liver disease:
1. Several fine liver cysts throughout the liver.
2. A few very large liver cysts that occupies a large portion of the liver.
3. Mixed both fine and large and medium liver cysts throughout a large portion of the liver.
In general at the age of 20, if individuals have many liver cysts, then this is an individual with severe polycystic liver disease PLD. If they are female, they should carefully consider alternatives to becoming pregnant or using birth control pills or taking any hormones.
In most individuals, symptoms do not occur until they are in their late 30's to early 40's. Sometimes it happens at 50. When it occurs this late, symptoms are very severe at this point.I knew from the age of 21 that I had liver and kidney cysts. They began to really bother me at the age of 42. I knew from age 21 that I had liver cysts that were too numerous to count. Yet I had my liver resection at age 50. I almost waited too late for some type of surgical intervention. It took me that long to find someone to help, someone who understood the difficulties this could pose.
There are certain foods that I find calming. One is a cup of chamomile with tupelo honey. Another beverage is fresh carrot juice.The carrot is related to parsley, another wonderful herb. I munch a leaf or two. Parsley is high in potassium, a great purifier, and lowers my blood pressure. Romaine lettuce is also a calming food.
HOW DOES LIVER CYST FORMATION BEGIN?
Liver cysts begin as tiny little microscopic sacs. Then stimulated by secretin and cyclic AMP they fill with fluid. Once they reach a certain size, they change from a blind duct to a cyst by breaking off and enclosing the entire wall, still triggered by secretin to fill with fluid. Secretin responds to acid chyme in the stomach. Cyclic AMP responds to caffeine.
Liver cysts are like flat little balloons, just sort of resting. Acid in the stomach causes a hormone to be released called secretin. This oozing of secretin starts liver cysts walls dripping fluid, filling, and expanding. The liver grows. These flat balloons become water balloons. The pressure from the slowly expanding water filled cysts pushes against organs, nerves on the skin, ribs, and other bones. This causes many individuals to experience pain, bloating, and discomfort particularly following a meal with caffeine.
Pretty soon, other tiny flat balloons join in and become water balloons. Eventually, over time, perhaps years, one has a basket of water balloons that can weigh upwards of 40 pounds or more. Cyst weight, pressure, and size interfere with the quality of life we are living.
One can tire quickly; get breathless from an exercise that was previously easy; or a number of other symptoms can occur causing discomfort and pain which further alter our self-image. If this is allowed to progress, liver cysts can slow and crimp the blood flow back to the heart, eventually forming clots in large major vessels. When this happens liver functioning declines.
Medical help includes avoiding hormones, caffeine, and a trial of proton pump inhibitors. Surgical help reduces the size of the liver: transplant, liver resection, and hepatic artery ablation. Draining of individual cysts helps relieve pain and is successful in only 5% of cases. Of these 5% who are helped, close to 100% need a second surgery within the same year. Pain relief does not last long and liver cysts return rapidly.
I had a liver resection several years ago. There has been no new cyst growth within my liver. The cysts did not return. My stomach remains flat. Other friends have had liver transplants and are equally pleased with their results. One individual has written that they have tried the new hepatic artery ablation. They were pleased to be told that there was a 40% reduction in their cystic liver size
What is a good diet for keeping liver cysts small?
The following is an abbreviated sample of what keeps my liver from enlarging. For a more complete listing read liver list avoids.My kidney functioning remains solid. Doctors are not as familiar with diets that help diminish liver cysts. It has not been studied. We have empirical knowledge or our experiences of living with cystic livers. They are not privy to the daily feedback from pain and discomfort that we are able to receive about which foods help and what doesn't. Check with your doctor to be sure that changes you might wish to make are beneficial for you.
AVOID ANIMAL PROTEINS.
I have stopped all animal products-all dairy, eggs, cheese, milk, meat, fish, poultry, game, lamb, broths, and more. Hamburger or ground meats are especially harmful and immediately cause intense pain. If it is not possible for you to eliminate all animal foods there are some better choices than others: non oily fish once or twice a month 2 ounces ; lamb 3 ounces (one lamb chop) ; cottage cheese (2 ounces) ; plain yogurt with added acidophilus (a half a cup; open an acidophilus capsule and add the powder to this half a cup); buttermilk; skim milk 2 ounces max; poached egg yolk once a month. Keep portions small and have only occasionally - no more frequently than once a week.
JUICES
I drink plenty of fresh prepared by me juices and eat a variety of raw fruits and vegetables. Avoiding only the nightshade vegetables (tomatoes, potatoes, eggplant, peppers, and cigarette smoke and tobacco products), strawberries, plums, prunes, and celery are a bit tricky (I avoid celery because it gives me kidney pain and increases kidney cyst growth. Pesticides are very high in celery).
GRAINS
Spelt, rye, corn, brown rice, black rice, wild rice, kamut require soaking in water. By soaking grains, nuts, legumes, peas, and beans all overnight or longer rids them of phytates. Spelt is one of the best grains for the liver. It is a wonderful tasting grain but is to be avoided with celiac disease. Sometimes I rough grind it in a food processor and cook it up as a cereal. I leave it cooked in my refrigerator overnight and heat and eat the following morning. When cooked this way, somehow spelt has a slight resemblance to the taste of ground nuts. Or I might flatten spelt into a flake and it tastes similar to oatmeal. I bake my own breads without yeast or sugar or honey or any concentrated sugar or sweetener (avoid white rice). I found out quickly by adhering to these pre-preparations of grains, nuts, legumes, this effectively diminishes liver pain and bloating.
ALKALINE RAW FRUIT
twenty minutes before each meal
I had alkaline raw fruits first about twenty minutes before a meal such as a banana, a pear, a sweet fuji apple, golden delicious apple, mango, papaya, ripe kiwi. No more often than every other day, an orange, grapefruit, tangerine, or some type of citrus. The only cooked foods I had were grains, spelt non yeasted bread, roasted sweet potatoes, cooked sunchokes, artichokes, beets, and other root vegetables. I avoided nightshade plants such as tomatoes, potatoes, eggplant, peppers, cigarette smoke.
CABBAGE JUICE WITH ALMONDS
Daily I had cabbage juice with almonds. To this day, I take cabbage juice with almonds.
LEMON JUICE
I have this first thing in the morning, then wait twenty minutes before having anything else. This allows the natural enzymes of the lemons to be present with what ever else I am eating. Lemon is a life saver for me. I take perhaps up to three or four lemons in a single day. This relieves discomfort, pain, bloating, liver pain, and migraine headaches – all part of PLD polycystic liver disease.
I go for organic Myer lemons whenever I can find them.
SAFFRON TEA
Another life saver. This tea will take care of what ever is missed by the lemon juice. It also helps the body to lay down new vessels. Keeps the blood from being slow moving and sluggish and encourages healthy blood vessels without aneurysm.
I have noticed from time to time that I get cramps in my fingers. When I examine my fingers I find that a small blood vessel has burst right along the edge where the cramp begins. This also happens in my toes and my legs. I think this is from PLD polycystic liver disease. I also feel that both saffron and supplemental all natural vitamin E (which I take only when I have cramp) all help prevent future attacks.
MILK THISTLE TURMERIC ARTICHOKE
DIMS (BROCCOLI SPROUTS PILLS)
The above are very useful for my liver. They keep it healthy so it does not hurt. I read that these herbs and supplements allow the liver to heal, increase the metabolism of estrogen by-products through the liver, and I actually noticed a measurable decrease in my abdominal girth when that was a problem. It no longer is. I have had a liver resection and had 3/4's of my cystic portions of my liver removed.
AVOID
AVOIDS FOR ALL HUMANS
peanuts, aluminum, candy, potato chips, lard, margarine.AVOIDS FOR PLD LIVER CYSTS
YEAST- maple syrup, honey, date sugar, sugar, all of these become a ferment in the body and become yeast like. The yeast like reaction creates a ferment similar to wine making from grape juice. This creates alcohol in the body and is very destructive to a cystic liver.
DETRIMENTAL FOODS - vinegar, pastry, wheat, potato, tomato, peppers, eggplant, chocolate, coffee, white rice, soy, chicken, ground meats and fish and poultry, diary,
The key is to have plenty of greens in daily salads. The salad dressing I make is olive oil and lemon juice. Vinegar is to be avoided. It too creates an alcohol ferment in the body. And of course to juice, juice, juice. Flush the body with plenty of freshly squeezed pressed prepared by yourself juices.
ELIMINATE if you have liver cysts
black tea
cod liver oil (check cosmetics)
chocolate
coffee
cola
even de-caf drinks
hormones
estrogen
green tea
phthaltates in cosmetics
phytoestrogens (soy)
white tea
xenoestrogens (DDT, pesticides, herbicides
I have a single 10 cm liver cyst. Should I have it removed? I have no pain.
The decision is ultimately with you. Risk for any surgery mainly comes from the anesthesia. With no symptoms, no pain, the literature reports that to do nothing would be a choice. However if anyone has mentioned the possibility of a biliary cystadenoma, biliary cystadenocarcinoma, then a simple cyst aspiration will not pick up cancer cells in the fluid that has been aspirated. If a person wants to know if the cyst is benign or cancerous, then surgical removal would be necessary. Did any doctor give you a reason to have it removed? Many would say if it ain' t broke, why fix it? A Korean study done in 2006 is available here. For the complete article written in Korean with photos, click here. If there is the possibility of a cancer, it would be preferable to have the surgeon resect the cyst to avoid spreading cancer cells throughout the liver.
A 10 cm solitary is a very large liver cyst. Probably you are carrying around an additional 10 pounds of cystic water. The literature has individuals seek follow up with MRI if solitary liver cysts are greater than 4 cm - just to be sure it has not grown or changed shape in some way or developed septations.From the Italy 2003 Gluliante F
The risk of misdiagnosing a hydatid liver cyst for a simple liver cyst, especially in the presence of a solitary cyst, should be considered before laparoscopic fenestration is performed.From China 2006 Yang MD
After two trials of alcohol ablation for a single liver cyst, that returned, this doctor tried glue.
last updated Thursday, March 6, 2008 3:32 PM