Chronic Pain Trial Study Leader: Dr. Marie Hogan at the Mayo Clinic in Rochester Minnesota USA Conducting a clinical trial on chronic polycystic kidney pain. This study utilizes an interventional procedure known as Videothracoscopic Splanchnicectomy (VSPL) similar to Videothoracoscopic splanchnicectomy done for pancreatitis pain. If any have relentless PKD kidney pain or know of someone with severe PKD kidney pain, the Mayo Clinic is seeking participants.
Kidney Cyst Deroofing is another surgical procedure done for pain relief. There are a handful of surgeons throughout the USA who perform laparoscopic deroofing surgery of polycystic kidney cysts and polycystic liver cysts. There are dedicated operating suites for this. Deroofing is solely for pain relief. It does not make kidney functioning worse nor does it make it better. It does not affect liver functioning. Of those that are helped with their pain, almost all eventually have to repeat the procedure. One individual noted that her liver cysts came back with a vengeance. She experienced no pain relief. The amount of pain has nothing to do with cyst size or numbers of cysts. Decompressing the cyst and relieving the pressure on other organs does not always stop the pain. The response is very unique with each individual.
Acupuncture Useful for Chronic PainAcupuncture Does Help for Chronic Pain
Acupuncture provides more relief from various types of chronic pain than does usual care and should be considered a valid therapeutic option, the authors of a meta-analysis concluded.
Chronic pain is often seen in PKD and is a major cause of morbidity according to this 2012 article.
Chronic Liver Cyst Pain
Though most of these articles are about kidney pain, many of these same principals apply to liver cystic pain. We too are desperate for some type of pain relief. I have come to learn that for a few of us, a simple cyst drainage, when optimized for the individual and sand bags are used to allow the edges of the cyst to cling to each other and stillness for two hours following the procedure seem important details that lead to much needed pain relief.
Another to try is to shift the S-shaped pain curve more toward normal through the use of anti-depressant medications.
ADPKD is a rare disease but even rarer is ADPLD or liver cysts only. Until these diseases make it into medical text books, physician may continue to doubt the validity of our pain. Continue to let your doctors about any pain you experience. We should not have to endure chronic pain on top of the many symptoms from cystic organs. Let our collective voices be heard.