HELLO EVERYONE,  THANK YOU FOR THE SUPPORT.  I'VE BEEN READING THIS BOARD FOR OVER A MONTH NOW, BUT HAVN'T BEEN ABLE TO GET MYSELF TO GO OVER EVERYTHING AGAIN.  I CAN SEE THERE ARE A LOT OF PEOPLE, ALL AGES OUT THERE WITH THIS MM.  HERE'S OUR STORY:
OUR DAUGHTER'S NAME IS AMANDA.  SHE IS A BEAUTIFUL 7 YEAR OLD FULL OF DREAMS, AND THE SWEETEST LITTLE GIRL.  WE HAVE A 4YR OLD LITTLE GIRL, ASHLEY-SHE'S ALSO GREAT!   AMANDA HAD 4SMALL FOCAL SEIZURES 6MOS-18MOS, WAS ON TEGRETOL AND SAW DR. VARMA IN BETHEL PARK, WHO WAS GREAT.  SHE HAS NOT HAD A SEIZURE SINCE AND HAS BEEN OFF THE TEGRETOL FOR AWHILE.  SHE STARTED HAVING HEADACHES AROUND 3YRS OLD, WE THOUGHT IT WAS THE TEGRETOL. THE NEUROLOGIST TOLD US IF HA CONTINUES, F/U WITH PCP.  WELL, WE DID THE HA DIARY AND IT SEEMED AS IF SHE GOT HEADACHES AROUND BIG EVENTS, HOLIDAYS AND WHEN NOT HAVING ENOUGH SLEEP.  PCP SAID SHE IS JUST OVERLY EXCITED AND MAKE SURE YOU GET HER REST AROUND BIG EVENTS, ETC.  EVERY HOLIDAY, AMANDA WAS NAUSEATED, HEADACHE AND VOMITS MUCOUS.  SHE EATS SOME BREAD, MAYBE TYLENOL; FINE IN COUPLE HRS.  MY MOTHER GETS MIGRAINES AND HUSBANDS SISTER, SO THOUGHT IT RAN IN FAMILY.  PRESCHOOL WAS GOOD, KINDERGARTEN WAS GOOD EXCEPT HAD 1 OR 2 WETTING ACCIDENTS, FIRST GRADE WAS GOOD/GETS 100% ON GRADES/READS VERY WELL, VERY TENATIVE AND SOCIAL IN CLASS.  HAD 1 OR 2 WET ACCIDENTS, COMPLAINED OF NOT SEEING WELL IN CLASS, I TOOK HER TO THE EYE DOCTOR, EYES PERFECT.  THEN CAME 2ND GRADE AND THE YEAR 2009. AMANDA PASSED OUT JAN 1ST, WE THOUGHT TOO MUCH ACTIVITY AND NO SLEEP!  PASSED OUT EASTER, VOMITED MUCOUS, AND STILL WITH HEADACHES, THEN STARTED TELLING ME SHE SEES SPOTS!  TOOK HER TO EYE DOCTOR AGAIN, EYE EXAM PERFECT, HIGHLY SUGGESTED WE GO BACK TO OUR NEUROLOGIST.  I WAS HAVING A HARD TIME, THINKING ALL THIS COULD BE R/T SEIZURES COMING BACK, I REALLY THOUGHT SHE WAS HAVING FOCAL SEIZURES AGAIN; WE JUST DIDN'T KNOW IT.  SO SHE HAD A URINE ACCIDENT AT SCHOOL, SAID SHE STILL SEES "DOTS, MOMMY THEY NEVER WENT AWAY, I SEE THEM ALL THE TIME, EVEN WHEN I CLOSE MY EYES" SHE DREW THEM FOR ME, THEY WERE JUST 1000 OF SMALL PENCIL MARKS ON PAPER, SAYS THEIR OFF-WHITE, BUT CAN SEE TV,PEOPLE, COLORS ETC FINE.  TOOK HER TO PCP THINKING SHE MIGHT HAVE A URINE INFXN, BUT STILL CONSTIPATED; STRONGLY SUGGEST NEURO APPT. 
WE SAW DR. VARMA, EXAM WAS GOOD,  HE WANTED A MRI, EEG; RETINA SPECIALIST (JUST TO BE SAFE; RULE OUT SEIZURE, DIDN'T THINK SHE HAD THOUGH).  THEN OUR NIGHTMARE BEGAN.
     OCT 3RD MRI AT CHIDLRENS HOSP PITTSBURG (FIRST TEST SCHEDULED)  WENT FOR MRI IN MORNING.  THIS MRI TURNED INTO 4HRS!  IT WAS ONE OF THE WORST DAYS,  I KNEW SOMETHING WAS WRONG WHEN THEY SAID MD WANTED CONTRAST, AMANDA WAS SO STILL, SHE WATCHED A MOVIE AND DIDN'T COMPLAIN ONCE.  THEN THEY STOPPED THE MRI, SAID WANTED SPINE TOO, GAVE AMANDA A BREAK, TOOK HER TO BR, WE CAME BACK, AMANDA GOT DIZZY, PASSED OUT IN ROOM, WE WENT TO ER FROM THERE, WORKED HER UP, IT WAS FROM NOT EATING AND LYING STILL ALL THAT TIME.  THEN THE CHIEF NEURO GUY CAME IN, DID EXAM AND INFORMED US OF WHAT HE THOUGHT, MM!  WE DIDN'T KNOW WHAT THIS COULD MEAN, IT WAS SCARRY, STRANGE; DEVASTATING.  SO THEY D/C US HOME WITH THIS BIG NEWS TO SCHEDULE A MRA.  THE NEXT DAY, THE CHIEF CALLED AND ASKED US TO BRING AMANDA BACK TO GET TESTS DONE NOW.  SO (EVEN MORE FRIGHTENING) WE GOT ADMITTED, HAD EEG, SAW RETINA SPECIALIST AND MRA.  THEN WE GOT THE DIAGNOSIS, HAD ALL THESE DOCTORS TELLING US THIS AND THAT.  AMANDA IS PHYSICALLY FINE EXCEPT FOR THE HEADACHES, PASSING OUT, TIREDNESS AND OCCASIONAL CLUMSINESS.  WE WERE THERE 2DAYS.  WERE TOLD SHE NEEDED ANGIOGRAM BUT NO OPEN SPACES SO WANTED US TO GO HOME AND SCHEDULE AS OUTPT.  WE THOUGHT ABOUT DECISON TO STAY OR NOT FOR TEST, SHE WAS NOT SICK; WE FELT IT WOULD BE BETTER TO DO IT OUTPT. SO,   (A LONG AND TROUBLED/FRUSTRATING SCHEDULING AND LITTLE ISSUES WITH CHP) WE ENDED UP GETTING ANGIOGRAM NOV. 4 (VERY SCARY AGAIN!)  THAT TEAM WAS VERY GOOD WITH US AND AMANDA.  THE RADIOLOGIST INFORMED THAT IT WAS MM BUT HAD TO WAIT TIL NEXT WEEK FOR APPT WITH NEURO SURGEON TO DISCUSS WHAT WAS NEXT!  IN THE MEAN TIME MY HUSBAND DID ALL THE RESEARCH AND FOUND DR. SCOTT AT BOSTON CHILD. HOSP.  EMAILED HIM REGARDING THE DX AND HE RESPONDED RIGHT AWAY AND INFORMED HIM TO SEND ALL RECORDS BUT ESPECIALLY THE ANGIOGRAM.  SO WE WAITED, HAD APPT WITH NEURO SURGEON, GOT RECORDS AND SHE BASICALLY INFORMED US THAT THE RT SIDE WAS 1MM OPEN AND LT SIDE 6MM AND COLLATERAL FLOW WAS WORKING BUT WANTED TO DO A MRI PERFUSION TO SEE EXACTLY HOW GOOD THE FLOW WAS BEFORE SURGERY PLANS, IF IT WAS BAD, SURGERY WOULD BE VERY SOON OR FOR US TO SCHEDULE BY JUNE. 
EVERYTHING HAS BEEN SO OVERWELMING; I THINK WE WERE ALL IN DENIAL, ESP SINCE AMANDA HAS NEVER HAD A MAJOR STROKE.  (THANK GOD FOR THAT)  THEY DO THINK SHE MIGHT HAVE HAD A SMALL TIA BEFORE OR THAT THE FOCAL SZ'S WERE TIAS?   SO SHE WANTED TO DO THE PIAL SURGERY ON ONE SIDE ONLY, WATCH THE OTHER SIDE THEN DO THAT SIDE WHEN IT GETS WORSE!  SHE RECENTLY MOVED HERE FROM BOSTON, AND PERFORMED THIS SURGERY 6MOS AGO, BUT NOT IN PITTSBURGH.  SHE DID STUDY UNDER DR. SCOTT ALSO DURING HER EDUCATION.  WE THEN GOT A CALL FROM DR. SCOTT AFTER REVIEWING RECORDS, BUT FOUND OUT THAT THE ANGIOGRAM WASN'T SENT, SO WE HAD TO GET THIS TO HIM BEFORE HE  COULD GIVE US A DEFINITE PLAN OR DX.  HE WAS VERY NICE.    
WE THEN WENT THE FOLLOWING WEEK FOR THE "SPECIALIST", VASCULAR NEUROLOGIST APPT 2 DAYS AFTER THE MRI PERFUSION SCAN,  SHE TOTALLY CONFUSED US BECAUSE SHE SAID SHE WOULDN'T PUT HER CHILD THROUGH SURGERY AND I HAVE BEEN VERY CONCERNED WITH AMANDA TAKING GYM, DECIDED IT WOULDN'T BE GOOD IDEA, SPOKE WITH GYM/NURSE AND TEACHER.  THE NEUROLOGIST SAID I SHOULDN'T DEPRIVE HER OF THAT NOW.   THIS WAS/IS SO SCARRY,  I KNOW AMANDA HAS NOT HAD A STROKE, WE ARE VERY FORTUNATE FOR THAT,  BUT HOW DO WE KNOW WHEN THAT COULD HAPPEN, BECAUSE FROM WHAT WE SEEN AND HAVE BEEN TOLD, IT WILL HAPPEN!!!  DR. SCOTT SAID NOT TO OVEREXERT/HYPERVENTILATE/PLAY CONTACT SPORTS, GO ON ANY RIDES.    DR. SCOTT EMAILED US AFTER RECEIVING THE MRI PERFUSION AND ANGIOGRAM, THAT SHE DOES HAVE MM, HOWEVER SHE IS NOT IN NEED OF EMERGENT SURGERY BUT HIGHLY RECOMMENDS DOING IT NOW RATHER THAN LATER,  HE WANTED TO COVERSE WITH HIS COLLEAGUES FIRST AND EXPECTED TO GET BACK AFTER THE HOLIDAYS AND NEURO CONFERENCE WITH A CONSENSUS.  HE WOULD SUGGEST DOING BOTH SIDES AND HIS TEAM IS HIGHLY TRAINED.
FROM THE INFO WE HAVE GOTTEN: SHE HAS STAGE 2.  WHICH I WON'T GO INTO ALL THE SPECIFIC ARTERIES, WE DID CATCH THIS EARLY.  THE DISEASE IS PROGRESSIVE AND THAT IS WHY SURGERY IS IMPORTANT FOR TREATMENT.  SHE HAS BEEN ON A BABY ASA SINCE DIAGNOSED.   

SO THIS IS WHERE WE ART AT NOW,  WAITING AGAIN , BUT NOW FOR A FINAL PLAN.  WE HAVE DECIDED THAT SURGERY IS OUR BEST OPTION; GOING TO BOSTON WOULD BE THE BEST DECISOIN BECAUSE OF THE TRAINED TEAM; EXPERIENCE WITH MM.  ALSO, PITTSBURGH DOES WANT TO SCHEDULE SURGERY IN 2MOS; THE NEUROLOGIST IS MOVING, SO WE WILL ALSO NEED TO FIND ANOTHER ONE.   JUST HAVING HARD TIME THINKING ABOUT PUTTING OUR CHILD THROUGH BRAIN SURGERY, WHEN SHE IS PHYSICALLY OK!  WE ARE MORE SCARED OF WHAT CAN HAPPEN AT ANY TIME WITHOUT THE SURGERY AND WANT TO DO WHATEVER WE CAN TO KEEP OUR LITTLE GIRL SAFE!
IT HAS BEEN SO HARD THINKING ABOUT THIS EVERY DAY 24/7.  I REALLY DON'T KNOW WHAT WILL HAPPEN.  I JUST FEEL LIKE I AM IN A NIGHTMARE AND WANT TO WAKE UP.  I WANT TO SEE AMANDA DO EVERYTHING SHE DREAMS TO DO.  I WANT HER TO GROW UP ALONG WITH HER SISTER AND ENJOY EVERYTHING LIFE HAS TO OFFER.  THEY ARE SO GOOD TOGETHER, I KNOW THEIR RELATIONSHIP WILL GROW.  AMANDA ALSO HAS A LOT OF FAITH.  SHE DOES NOT KNOW EVERYTHING, JUST THAT WE ARE TRYING TO FIGURE OUT HOW TO TREAT THE HEADACHES AND WHY SHE HAD SEIZURES,  THAT THEY ARE LOOKING AT ARTERIES IN HER BRAIN, THAT'S WHY SHE'S HAVING SO MANY TESTS AND APPTS.  I DON'T KNOW IF THIS IS THE RIGHT THING TO DO OR NOT.  I JUST DON'T WANT TO TELL HER TOO MUCH BUT THINK SHE HAS TO BE AWARE OF HER BODY AND WHAT IS GOING ON WITH IT, SO SHE CAN BE ALERT AND ALERT US.   THERE ARE SO MANY QUESTIONS, DOUBTS AND FEARS. 
LASTLY, AMANDA SAYS A PRAYER BEFORE BED EVERY NIGHT TO HELP HER FEEL SAFE:  CAST YOUR CARES UPON HIM, HE CARES FOR ME!
ANY HELP WOULD BE GREATLY APPRECIATED, ANYONE OUT THERE WITH SIMILAR STORY OR LIVE IN THE PITTSBURGH AREA?           TAMMY.

Wow Tammy, you are spot on with everything. Everything you are doing is textbook for moyamoya. Amanda is extremely lucky to have you for a mother.

Surgery is generally the only solution for moyamoya. The success rate for a surgeon with Dr Scotts experience is very high and if he says it's OK to wait awhile then it must be.

It must be so difficult for Little Amanda to understand what's going on, my heart really goes out to her. I think she needs to know a little about what's happening but you want to sugar coat it as much as possible, probably exactly what you're doing.

You really are much further into this than most parents when they find us and I'll say it again, you've done everything right. Keep faith in your little girl, her strength and understanding will surprise you. She, and you, will get through this. She might not be able to do the physical exertion that other kids do, but there's no reason to believe she won't lead a long and fulfilled life.

I'm really sorry for what you are going through but I'm also really glad you found us. We'll get through this together.

Stay strong
Mark (Luca's Dad)

Hi Tammy,

All of us understand perfectly what you are feeling, because we have been in your shoes before … I think you are in the right way, looking for as much information as you can. I think that the most important thing is that you feel comfortable with the decision you take. Our daughter was operated by Dr. Scott in Boston 8 months ago (they did both sides in the same surgery), and she is doing very well. Please feel free to ask as many questions as you have. We are here to support. I know you will pass through this and Amanda will be fine.

All the best,

Paula

Hi Tammy,

I'm so sorry to hear that your little girl is sick.  I know exactly how you feel.  This is a horrible disease, but you can get through it.

My name is Patti.  I don't live in Pittsburg, but I live in Pennsylvania in a suburb of Philadelphia.  I'd be happy to help you in any way that I can. 

My now 15-year-old son has MoyaMoya too.  He had his surgery when he was 9-years-old.  He's doing well now, but he still has some issues.

Doctor Scott performed my son's surgery.  I highly recommend that you do exactly what he suggests that you do.  He is the expert - and I can tell you that he has your daughter's best interest in mind. 

If your doctor in Pittsburg gives you information that conflicts with what Dr Scott tells you, by all means, listen to Dr. Scott.  He is wonderful, and I credit him with saving my son's life.

God bless you and Amanda.

Hi Tammy - I am new to using this site.  My 6 yr old son was diagnosed in January with MM and just had his surgery last Friday 2/5 and just came home yesterday Tue.  His surgery was done by Dr. Smith at Childrens in Boston.  I am not sure how to really reply or to communicate back and forth with you - but if you have any questions about Boston or Dr Smith - please contact me.  I do have a few suggestions for your hospital stay.  Sincerely, Susan H

Welcome to the family Tammy!

We all have been through almost the exact same things. I can not add more to what has already been said. I am willing to answer any questions you might have.  Stay strong!!
Becky

Hi , i just read your story and it sounds very similiar to my own , my son who is 12 now ,  was getting alot of headaches and other than that all was good , he was diagonosed with mm last April after having an mri , and for some reason the day he had the mri the technician decided to do an mra , that is how he got the diagnosis , Josh has had no signs of having any strokes nothing no tias , the mm has just affected the left side , i was on the fence on what to do wait and see if he has a stroke or do surgery and get the blood flowing , we choose the surgery option , but since this disease is rare and i live here in Toronto , Canada , there was not alot known on the disease, the surgeon we were referred to had done a few surgerys but not alot , which from my understanding is the norm for this mm, we had investigated going to Stanford to have the surgery , but  the cost for us was over welcoming , different Countries and all , i am very happy to say Josh had the indirect approach done on the  left side and everything went amazing , now 2 plus months post op all is good the headaches have lessened big time the scar looks amazing very small , and he is looking forward to base ball season to begin , and getting back to being able to do gym all the time , minus high contact sports of course , if you need to talk please send me a message , i so understand your ???? i was in the same boat as you not to long ago , this site kept me sane and scared me at the same time , but my lil boy is pretty well back to normal minus not tolerating the aspirin very well , less then a year after his diagnosis!!!!!!!! Take care , you and your family  are in my prayers !!!!!!!!