ADPKD patients commonly report symptoms such as abdominal or flank pain and fullness, which can often be explained by enlarged kidney cysts. As cysts grow, they press on the surrounding parenchyma (kidney 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.
Some clinicians will 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, and some patients have reported an improvement in pain 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 15% of patients, and cyst infection requiring antibiotic treatment in ~2% of patients. 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 or function.
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. Research is still ongoing as to how cyst sclerotherapy might influence kidney function long-term. Talk to your nephrologist about options to address your symptoms.
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 is in the process of defining these PKD-specialized care centers and will provide more information in late 2019. For more information, please email firstname.lastname@example.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.