• What are kidney cysts?

    When ADPKD patients report symptoms, like abdominal or flank pain and fullness, they can often be explained by enlarged kidney or liver cysts.

    As these cysts grow, they press on the surrounding kidney or liver tissue which can lead to obstruction of blood or urine.

    Over time, these enlarged cysts can contribute to the deterioration of kidney function for ADPKD patients. Larger liver cysts are associated with abdominal and rib pain and shortness of breath.

  • What is kidney cyst sclerotherapy?

    Kidney cyst sclerotherapy involves two steps: aspiration (draining) of the large cyst(s), and then sclerosing (destroying) the inner lining cells to prevent fluid from reaccumulating in the cyst.

    Some PKD Foundation Centers of Excellence clinics have specialized radiologists who can perform this procedure. It’s performed under conscious sedation or local anesthetic. Some patients have reported an improvement in their pain and overall symptoms.

    This procedure includes the risk of pain where cyst(s) were drained. Pain may last for a few days. Up to 20% of patients will require medication for pain relief.

    However, research is still ongoing regarding:

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

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

    Currently, cyst sclerotherapy is recommended in cases of very large (e.g. orange-sized) kidney cysts which may cause pain or a “mass effect” such as bloating and abdominal distention.

    Ongoing research and small studies suggest cyst sclerotherapy doesn’t influence kidney function long-term. Talk to your nephrologist about options to address your symptoms, and check if your nephrologist can share your imaging findings with you. Sometimes, a diagnostic aspiration of a cyst smaller than 5 cm in diameter may help to establish if the cyst(s) of interest are causing your pain.

  • Where can I go to have kidney cyst sclerotherapy?

    Most PKD-specialized clinical centers will be aware of cyst sclerotherapy, but they may have their own strategy for recommending the procedure to patients.

    As the procedure is guided by imaging of the kidney, it’s 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 PKD Foundation Centers of Excellence 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 isn’t listed, please email carecenters@pkdcure.org.

  • Where can I find information about current research?

    There’s ongoing research to see if draining large kidney cysts will slow declining kidney function. Please note that this is research and doesn’t currently apply to clinical care.

    At the 2018 Toronto PKD Scientific Conference, Eran Shlomovitz, M.D., FRCPC, FRCSC, FACS, demonstrated the “Foam Sclerotherapy” procedure and Ioan-Andrei Iliuta, M.D., presented preliminary results of its success in reducing kidney volume in selected patients and associated side-effects.

    You can view their presentations here. The Mayo Clinic is also performing these procedures for both liver and kidney cysts in suitable patients. Click here to see their latest poster on their research.