Multicystic Kidney

[Tedi Randall]

My 11 year old daughter had a sonogram perform because of Hematuria.  The right kidney is almost completely replaced by a multiseptated large cyst which measures 13.9 cm x 13 cm x 8.8 cm.  It is believe she was born this way.  Her left kidney appears to be normal.  Her Nephrologist has not made a determination to remove the cyst.  He did admit this is the larges cyst he has seen in a child.  My question to you is:  What questions should I be asking?  What test should I request be done first?  Can cyst burst?  Any help you can offer will be great appreciated.

A scared mother.....

[HFHS M.D.-BL]

Dear Tedi,

A finding of a large multiseptated cyst on ultrasound could represent a multitude of conditions.  The possible diseases include anything from benign entities such as multicystic kidney to the pre-malignant condition of mesoblastic nephroma.  It is very difficult to make a recommendation on how to work up this lesion or to assess the risk of rupture without seeing the Ultrasound myself and examining your daughter.


One very likely diagnosis is multicystic kidney.  Although present at birth, a unilateral multicystic kidney can be silent through adulthood.  These cystic kidneys are usually discovered incidentally on a work-up for hematuria, abdominal pain, or other complaint.  Multicystic kidneys are typically followed by ultrasound, but patients must be followed closely for the development of hypertension and urinary tract infections(UTI’s.)  UTI’s can occur in these patients due to an associated vesicoureteral reflux.  Many physicians like to perform voiding cystourethrograms(VCUG’s) to evaluate the other kidney for reflux which can lead to infection and possible kidney damage.  Obtaining an appointment with a pediatric urologist may answer many of your questions and help put your mind at ease.


This information is provided for general medical educational purposes only.  Please consult your physician for diagnostic and treatment options pertaining to your specific medical condition.  More individualized care is available at the Henry Ford Hospital and its satellites (1 800 653-6568).


Sincerely,
HFHS M.D.-BL

[RYAN E. BOBER]

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[james mead]

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[A worried Aunt]

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[bighaml]

We saw the pediatric urologist yesterday for my 22-1/2 mo old granddaughter. We previously knew she had a duplicated kidney with level 1 reflux to the other kidney. She has had a couple of UTIs and on a sulfa drug for months now. To our shock, he said, she has the duplicate system, but the real problem is a cyst in her bladder-like a "ping pong ball" blocking the urine and causing the reflux. He described 3 treatment options, which frankly, due to shock, I did not really grasp. But the first being a non-invasive procedure to "puncture" the cyst and let it drain. He recommends that first (80+% effective). If that doesn't work he recommends the more invasive procedure-these are the ones I did not quite catch, except that the third involved an incision along the side and removing the upper portion of her kidney that is not functioning correctly. Damage he says is probably from the UTIs. He called the cyst a "renal ________". Please help me know more. Of special concern is that his nurse, in giving us some info after he left the room, said the non-invasive procedure goes through the vagina-wouldn't it have to be through the urethra? Wouldn't going through the vagina to get to her bladder mean puncturing her uterus?  All this is complicated by the fact that we live in New Orleans. There is a tremendous deficit in healthcare professionals since Katrina. This is the only Ped Urologist, as I understand it, in all of LA and half of MS. The next nearest is in Jackson, MS. There have been months between the UTIs, ultrasounds, VCUG, and finally yesterday the nuclear med test and the Ped Urologist appt. She has been on antibiotics since January.

A concerned New Orleans Lady