Marie-Louise: Simple Cyst Aspiration in Germany
ADPLD I had a simple cyst aspiration with sandbags. I have had a few successful simple cyst aspiration procedures at Charité hospital in Berlin, Germany.
I only have ADPLD, and have been treated for many years at the Charité hospital in Berlin, Germany. It is the German equivalent of the Mayo Clinic USA—it is the place where people from all over Germany are sent when the local doctors or hospitals are unsure as to what to do, so they are very experienced in dealing with rare diseases and confusing situations. The doctors are patient, withhold diagnosis until they are sure, and really an excellent group of doctors.
Professor Herbert Lochs, head of the Gastro-Enterology, Hepatology and Endocrinology Department, treated me for many years. Unfortunately, he has now moved on to Innsbruck. But he felt sure that simple cyst aspiration would be the way to go for me, and that has proved correct.
When I go in for a simple cyst aspiration, they ask me to identify the areas within my liver of cysts causing me pain. I have done as many as (7) seven cysts at one time. They also have a procedure that makes it possible for them to guide the needle exceedingly very precisely.
When they put in the local anesthetic this deadens the muscles over the liver, and when they make the initial cuts, there is some pain, but I am so happy that I will soon be completely pain-free that I don't mind at all. I am able to watch everything on the ultra-sound.
When they are finished, I am forbidden to move a muscle—I am lifted carefully back on to the hospital bed, and wheeled to my room. There, they place a heavy sack of sand over the area, and I must lie completely still for 2 hours. The nurses bustle in and out, making sure I am still, checking my blood pressure, asking how I am, and generally keeping an eagle eye on me. The sand bag is heavy, and the idea is that the empty cyst walls are squeezed together, and thus do not refill. They do not inject alcohol, both because they feel the sand bags will take care of the question of refilling, and because they believe that any injection of anything carries with it the added risk of introducing infection.
After two hours, I am allowed to get up, have something to eat, and generally rejoice that I am pain free. The next morning, I am back in the ultrasound department, where they do a final check to be sure there are no fluids in the abdominal cavity. In fact, they are not only checking the previously drained cysts, but also checking to be sure that no fluid has leaked into the abdomen--fluid from the drained cysts--such fluid could cause infections, and must be dealt with immediately. If the cysts start to refill, because of the procedure making holes in the cyst wall, that fluid MIGHT leak, so you might not see the cysts refilling, but could possibly see free fluid in the liver or abdomen, and that is cause for immediate action. They do all of this just to be careful, which I appreciate; there has never been any type of fluid found in my abdomen (free fluid) following this procedure.
Here are more details: The offending cysts are drained, with or without the extra device, but always with ultrasound direction. And no, they inject nothing into the liver after draining the fluid. You can watch on the ultrasound as the cysts are penetrated and then shrink as the fluid is removed, and they are very careful to reduce the cysts down to absolutely nothing.
They collect, measure and analyze the fluid they drain out, and you can see it. The drainage from mine has been sometimes pure like water, and sometimes slightly yellow.
When I had the procedure done in the USA, they injected alcohol into the cysts, which I not only found very painful, but at least one of the cysts refilled rapidly, so I am not a believer in that method. Also, in the USA, it was done on an outpatient basis--no re-check the next day to make sure all is well and no re-check to see that the drained cyst had not re-filled with fluid.
The German way seems more cautious to me. In the USA, they used a general anesthetic instead of a local. After months of pain in my liver, the short pain from the anesthetic injection is not something I feel warrants the heavy artillery of a general anesthetic.
It has now been more than a year since the pain-causing cysts were drained, and I have, on two occasions, had about 10 minutes of twinges from my liver. But no pain--not a bit. The big cysts are all deep inside the liver, and the pressure on the stomach causes constant nausea, but no direct pain, so I have no plans to have anything done for a good long while.
It is my hope that you, too, will find great relief, and that it will be a good long time before new cysts send you off to find treatment once again. But at least, if all goes well, you will know where to go to get relief, and thus, the whole PLD situation will become a side issue as you get back to enjoying life.
The first few times it was done, I had to have two procedures per year, but then I became aware of the PLD diet, stopped drinking coffee (not easy), and generally did what I could to follow the diet guidelines, and am now up to one procedure every 1 ½ to 2 years. In between, I have no pain, and expect the time in between to grow longer and longer.
Some PLD sufferers have commented that they prefer a more permanent solution like a liver resection, but I feel that liver surgery is such a major operation, whereas this procedure is easy and less hazardous. I am hoping that the time in between grows longer and longer, and feel that simple and less risky is the way to go for me.
I hope this answers some of your questions, but if there is anything else you would like to know, please do not hesitate to ask. And I do recommend that you think about your options, and consider a simple cyst aspiration, even if others have not had the success I have had with that approach. When I was at the Mayo Clinic and had the procedure there, I told them about the sand bags, which was new to them, but they had such sand bags, and applied them after the draining, and that procedure was as successful as those in Germany have been. That procedure was a year ago, and I am still pain free, which I attribute to the sand bags.
I wish you every success with whatever it is you decide.
