Kidney Cyst Sclerotherapy

ADPKD patients commonly report symptoms such as abdominal or flank pain and fullness, which can often be explained by enlarged kidney or liver cysts. As cysts grow, they press on the surrounding parenchyma (kidney tissue or liver tissue) which can lead to obstruction of blood or urine flow.  Over time, these enlarged cysts can contribute to the deterioration of kidney function for ADPKD patients. Large liver cysts are associated with abdominal and rib pain, shortness of breath.

Some ADPKD Centers of Excellence have specialist radiologists who are able to perform a procedure called cyst sclerotherapy which involves two steps: (1) aspiration (draining) of the large painful cyst(s), and then (2) sclerosing (destroying) the inner lining cells to prevent fluid from reaccumulating in the cyst. The procedure is a day procedure performed under conscious sedation or even local anesthetic and some patients have reported an improvement in pain and mass symptoms. The risks of this procedure include local self-limiting pain that may last for a few days requiring medication for pain relief in up to 20% of patients. However, research is still ongoing regarding:

1. Which ADPKD patients will benefit from the procedure.
2. Long-term benefits of cyst drainage on renal blood flow, total kidney volume or function.
3. Sclerosing agents used for cyst drainage (ablation) and use of new foaming sclerosant agents

How can I find out if I qualify for this procedure?

Clinicians currently recommend cyst sclerotherapy in cases of very large (i.e. generally greater than 5 cm, or the size of an orange) kidney cysts which may cause pain or a “mass effect” such as bloating and abdominal distention. Ongoing research and small studies suggest as to how cyst sclerotherapy does not influence kidney function long-term. Talk to your nephrologist about options to address your symptoms.  Check if your nephrologist can show you your imaging finding with you and how they relate to your pain and discomfort. Sometime a diagnostic aspiration of a cyst >5 cm in diameter may help to establish if the cyst (s) of interest are causing your pain.

Where can I go to have this procedure? How can I find a clinician who can do this procedure?

Most PKD-specialized clinical centers will be aware of cyst sclerotherapy, but may have their own strategy for recommending the procedure to their patients. As the procedure is guided by imaging of the kidney, it is often led by an interventional radiologist who would need to be familiar with this type of procedure and make the decision in consultation with your nephrologist.

The PKD Foundation has designated Centers of Excellence in ADPKD who are required to have an interventional radiologist as a part of their core care team. Check out our Care Centers page to find one near you. If you know of a PKD clinic in your area that is not listed, please email carecenters@pkdcure.org.

Where can I find information about current research?

There is some research ongoing to see if draining large cysts within kidneys will slow decline in kidney function. This is research and does not currently apply to clinical care. At the 2018 Toronto PKD Scientific Conference, Dr. Eran Shlomovitz demonstrated the Foam Sclerotherapy procedure and Dr. Andrei Iliuta presented preliminary results of its efficacy in reducing kidney volume in selected patients and associated side-effects. Please view their presentations here. Mayo clinic is also doing these procedures for both liver and kidney cysts for suitable patients. Click here to see their latest poster on their research.