I know that there are times when moyamoya presents with occlusion of the renal artery.  I was wondering if anyone knows how that shows up symptomatically.  I know that it is not something that they routinely check for so I was wondering what would be happening to lead them test for it.  Also, if renal artery stenosis is found, what is the treatment for that?  Anyone have any experience with this type of mm?

Danielle is right - a renal ultrasound is easy, non-invasive way to check for problems in the kidneys.  My son had th ultrasound and a renal scan to check for problems after high BP showed up 9 yrs post-stroke (due to MM).  The scans showed that his right kidney was smaller than it should be due to the reduced blood flow the MM caused (stroke was in the left hemisphere).  His left kidney was also smaller than it should be, but w/in normal range. this was causing his kidneys to produce the wrong amount of renin which regulates BP.  He now takes cozaar to keep his BP down. He's only 16.  They also checked out his cardio and all was OK there.
Bottom line, MM can cause problems in other areas of the body and they may not show up for years.  After the stroke, the Dr's had measured his left/right sides so we knew his right side was a bit smaller than his left, but it never occured to us (& no health ofificial ever mentioned) that his internals could also be smaller.  Knowledge is power!

Sue

Hi Tracey,

You’re right; this is not a subject that gets talked about very much, but one that interests me very much. I too tried to do research on it and only found outdated journals where a small percentage of MM patients also had renal stenosis, which led me to some research about FMD (Fibromuscular Dysplasia) a condition similar to what Sue just explained about Kyle, that can cause Renal hypertension, but I couldn’t find any information where there was a MM “connection” to the renal stenosis and MMD. I found associated cases, but not specifically linked to MMD.

FMD really sparked my interest a while back, not only because it causes renal stenosis, but because of Lore’s brother, Kevin's (Cubbie) complicated MM case. He was diagnosed with FMD for many years before MM. FMD is where the cells in the "artery wall" overgrow and narrow the artery, and it occurs in the renal arteries in 75% of all patients with FMD, but the other most common artery is in the carotid artery in the neck, which would then leave a FMD patient with many of the same exact symptoms as MMD (narrowing of an artery that supplies blood to the brain) and in Kev's case, he had a dissected carotid, so naturally all that sparked so many questions for me... is FMD or renal stenosis related to MMD in any way (?) but with no answers.

Like you said Tracey, the other frustrating thing is, with stenosis in the renal arteries, or less often, the arteries in the abdomen (supplying the liver, spleen and intestines) you may not have any symptoms or signs at all, or with a physical examination. It depends on the arteries affected and the degree of narrowing within them, but there are tests to detect it. I don’t even know if there should be or is a concern for MM patients to be screened/tested for renal stenosis or not. I guess that’s what I wanted to find out and can’t, but if I were you, I’d go with my gut. I know every case is different, but after all you’ve been through with MMD, you can’t always believe some in the medical profession without testing. I’m a firm believe in going with your instincts. Nobody knows your body better than you do. I know I’d feel better if I had an MRI or CT scan to be sure. If you feel something is wrong, ya gotta get the answers.

My thoughts and prayers are with you.

Mar

Wow what great info. My pregnancy and delivery with Adriana was picture perfect. The only problem that showed up during ultra sound was that one of her kidneys was larger than the other one. The Doc's suspected something called renal pelvis. A later ultra sound then showed that both kidneys where normal size. I have always wondered what was going on.

Sue after hearing what happened with your son I think that is why her kidneys were different sizes. What is high BP's mean? My daughter had an ultra sound done on her kidneys after her diagnosis and her blood flow was normal. Now I wonder if I should have the Doc's check her kidneys periodically? There obviously was a problem at one point and that was even before birth. Any advice would be appreciated. 
Thanks, Danielle

Gazoe, Thanks for sharing. I am going to talk to her neurologist at the end of the month about my worries with her kidneys. She has not had high BP in the past so that is a great thing for us to look for. Lately her BP will not read at the doctors office. They just move on and don't think its that important. You always have such great advice. Good luck with your decision and controlling his BP.

I have to say that I am surprised to hear of so many with MM and renal artery stenosis.  All this time, I thought Matthew was just DOUBLY rare. 

Matthew was found to have his right renal artery stenosis at the same time as his MM.  When he stroked, and we began looking for reasons, his bp was HIGH.  It was running 150/105.  At first, I thought that was the reason he had stroked.  The pediatric neurologist referred us to his pediatric nephrologist.  We did an ultrasound, which showed that his right kidney was smaller than his left.  The doctor explained that it wasn't supposed to be that way.

When we did the arteriogram to look for a reason for the stroke, the nephrologist said, "Well, while they are in there, let's swing on by the kidneys and see what's going on."  Apparently he would normally have done other less invasive tests first . . . but since we doing it for the stroke, he took advantage of it. 

Matthew's doctors do feel that his MM and his renal artery stenosis are related.  In fact, his nephrologist had seen a previous case in Seattle. 

Here's where he messed up though . . . when we returned to Dr. Scott for the one year arteriogram, the nephrologist wanted to try angioplasty to open the vessel.  He figured Boston's Children's Hospital was a great place to have it done.  What I didn't know . . . angioplasty has been shown to be ineffective in children, especially those under 12.  Matthew was 8 at the time. 
When the angioplasty was done, small bits of blood vessel broke off and occluded the small blood vessels to about one-third of his kidney.  The doctor in Boston told us this, but didn't explain the full implications.  At the time, we thought the procedure had worked because his bp returned to normal and we stopped one of the two meds. 
Later, during a 24 hour bp study, we found that his bp was back up. The docs then asked for a renogram.  Basically, they inject a nucleotide and watch the kidneys filter it out of the blood.  We had had this done before and had seen Matthew's right kidney filter slow.  This time -- his right kidney did NOTHING!!  It wasn't working at all!  I freaked!!  I had the docs in there. 
They admitted Matthew and did another arteriogram.  At the time, they thought the vessel was good.  It was at this point that I started researching and found out about the ineffectiveness of angioplasty.  I wasn't too happy, but they explained that they had wanted to try the "least invasive" first.  I said I wanted to go with the "most effective".  I even had the new doctor scold me for contacting other nephrologists for their opinion.  He told me he was the doctor and I needed to leave it to him.  I responded with absolutely NOT!  I am his mother -- and we are a team.  We need to both research, find the best procedure, and discuss it together!  He did get it and understood. 

That was how we found Dr. James Stanley in Michigan.  I was surprised to see someone else mention him.  He is a vascular surgeon.  His procedure was to take an iliac (I think) artery -- an artery that supplies blood to the groin area -- and use it to replace the renal artery.  He was the one who assured me that moyamoya would not continue to show up in other vessels overtime.  He is the doctor who told me it picked the vessels, affected them -- and didn't "spread". 
However, once he started the surgery, he found that the angioplasty had actually killed one-third of Matthew's kidney.  The renal artery had looked fine on the last arteriogram because they had only x-rayed it from the top.  From the side -- it was paper-thin!!  He felt he had no choice but to perform a nephrectomy.  And that's how Matthew lost his right kidney. 

Since then, he has done well.  His bp returned to normal -- or at least until puberty when testerone became a normal part of his bloodstream.  That slightly elevated his bp.  He began running pressures of 140/80.  With a single kidney, they want it lower.  He currently takes 2.5 mg of lisinopril 1x day.  It's the smallest dose possible.  He now runs bp's of 120/60. 

His main concern (being a kid) -- he couldn't play football.  This year, however, his senior year, he talked to the nephrologist.  We found out he could have pushed the issue.  It was more a risk of damage than loss.  And he really wanted to do it.  And hey!  He and I match blood types!!  (I am being sarcastic!!)
To conclude, he did play football.  He had the time of his life and enjoyed every moment.  He cried HARD when his team was eliminated from the state play-offs. 

That's his story -- and the story of how I learned to:
1.  Research EVERYTHING as much as I did MM to find Dr. Scott.
2.  Not look back on decisions.  It's done, I can't undo it, and I have to move forward.

Kimber - mom to Matthew, 17, three strokes due to moyamoya at age 7 and single kidney due to renal artery stenosis, Laura, 22, Jacob, 14, and Kay, 10.

Hi Kimber,
Thank you for sharing ! I am meeting with the nephrologist next month to explore option for my boy. I know that both him and the neurologist are not in favor of angioplasty. I will do some research on what other options might be available. Would you be able to give me the name of the procedure Dr Stanley wanted to perform on Matthew as I would like to look more into it. I might have more questions later.
Once again thank you for your input!
gazou

Hmmm, this subject is interesting bc I too was diagnosed with a smaller kidney on one side and high blood pressure as a child at age 10! The doctors could never figure out why.  I'm 29 and just got my MMd diagnoses a year ago!!  Seems like a correlation to me...

I am posting this link.  Some of you may have read about it in the Dear Abbey section of your newspaper, but here it is anyway!  This link will take you to the National Kidney Foundation website where you can find a free local screening for your kidneys.

http://www.kidney.org/

God Bless You All
Michele

SUE, DANIELLE AND EVERYONE, THANK YOU FOR YOUR WISDOM AND SHARING YOUR KNOWLEDGE. i HAD NOT EVEN THOUGHT OF KIDNEYS UNTIL READING YOUR POSTS AND SUGGESTION OF DR. SCOTT, THANK YOU
PAULA CAN YOU TELL ME IF THERE WERE ANY SYMPTOMS OF THE MESENTERIC STENOSIS? LIKE SEVERE CHRONIC DIRREAH? WHAT WAS THE TREATMENT. MOLLY WILL BE HAVING TESTING ON HER KIDNEYS SOON
THANKS, CHARL