HI My little girl who is 8 has moyamoya. Her first surgery is next week.  She is complaining of back pain.  Anyone else experience this?  I've asked the nurse and she said it is not related, but I'm just wondering.  Thanks!

Hi Lmom

Welcome to this forum and I'm sorry you're daughter has to join this elite group of fighters.

When Luca was first diagnosed, they did scans on her kidneys to check for blockages that could have caused the stroke, apparantly not that uncommon. Luca's kidneys were clear, but if your daughters pain is in the lower back on either side, it might be worth following up.

It could also be her kidneys struggling to process some of the medication she's on.

Try and get her to drink lots of water (which is essential anyway) to flush her kidneys.

If you feel like sharing your daughters story, you'll never be short of ears here.

Good luck and I'll be thinking of your daughter next week.
Mark (Luca's Dad)

Mark,

Thank you!  The pain is higher up but I am going to ask the doctor about kidneys.  I have been trying to push the water, but will push harder today!  She had two strokes the weekend of April 19 and was diagnosed with moyamoya within four days.  She is Asian - adopted at 9 months old.  We do not know any of her birthfamily medical  history.  She's really doing good as far as recovering from the strokes - seems to have no residual affects from that.  Right now we are just trying to keep her healthy (no colds) until the surgery which is really hard as her brother has a cold!  
Thanks!
Jody

Hey Jody

Where are you? Most of the people on this forum are from the USA and fast asleep while I'm posting.

I'm sure you've learned in your research of moyamoya that it was originally believed to only have afflicted Asians. We actually came very close to taking Luca to Japan for her surgery where they've got a moyamoya clinic with surgeons who have performed many, many bypasses.

I'm really glad to hear that your daughter was not too badly affected by her strokes. After two strokes last year, Luca has been left with compromised eyesight and her right side is weak, but she's showing improvement.

Where are you having the surgery and who is the your neuro-surgeon?

Stay strong
Mark

HI

We live in Kansas but are having surgery in Texas!  I've got two other older kids I'm leaving at home with Grandma.  My oldest is moving to Spain this summer, so we have a busy summer.

Thanks for posting!

Oh yeah - surgeon is Dr Dauser.  Your daughter's picture is adorable.

Lmom,

I have keiple feil (congenital fusing of veretabre in the back) & neck) When Robert was diagnisosed with MM and his pediatric nuerologist asked me about my medical history. he said that the 2 were related they did a full scan of Roberts back and found none but Roberts never complained of back pain either. with the studies showing that MM is most likley genetic its my guess the same gene that causes MM may also cause  Keiple feil which is also associated with autism, and photographic memory, both Robert and I have high retention on memory

Thank you!  I will ask her neurologist about that.
Jody