I've added a modification to the board that will allow me to put up occasional poll's, such as this one, to see what certain ascpects in our demographics look like.

It is very important that only ONE person from each family actually fill in the age to this poll.  If in doubt, click the "family member" option.

I'd like to try and get a good idea how old the actual moyamoya sufferers were when they were first diagnosed.

I am also working on a very short demographics survey for the site, and a much more detailed survey for LisaH that will also be available soon.  For now, let's see how this one works out before I add any more poll's.

;;D

-DJ

Hey DJ - Great idea.  I would also be curious of 3 other stats....

1.  How many people had a stroke before they were diagnosed?
2.  How many people were tested for MS, for example, and diagnosed with MM?
3.  How many people are of a Japanese decent?

These questions were subjects on prior posts, so I'm not taking credit!  But I think the polling mechanism is great and would give more solid results!

-Shari

DJ---could you also set up some type of questionnaire/poll that asks questions such as:

How many people were misdiagnosed with another illness BEFORE the proper diagnosis was made, and if so, what was the illness that was improperly diagnosed?

How many people were discovered to have moyamoya disease as a result of suffering a mini-stroke or TIA?
a massive stroke?  

How many people were given steroids as a result of a misdiagnosis?  (as you know, this is extremely personal to me....)

Just some thoughts for future questionnaires..........also, for each respondent, the age of the person who was diagnosed with moyamoya should be set forth........Love, Pat :) :-*

hi,

i was 28 when i suffered a stroke and the er doctor ran an angiogram and sicovered i had moya moya. up until that time, i was diagnosed with ms a year prior to.

doug

With the results as they sit now, no wonder they told me Tyler wasn't the right age for MM. Just goes to show not everyone will fit into the "norm".

I hear you Rena MAndy neither.
                 Nancy

Hi DJ and others!

I think this topic is an excellent idea and apart from the already mentioned I have a couple of questions that I´m curious about:

What medication are you on?
What kind of surgery did you have?
What kind of follow-ups do you have and how often?
Do you have symtoms from the disease regularly, what symtoms and how often?

I´m sorry but I could just go on and on because there is so little info for me to find as I have said before many times, so these answers seems important.
Would be great if you could make something out of all our questions and I think the results should be interesting to the experts too!!! Let´s face it;  there is not much research being done on this disease, no one ever contacted me about it for instance!
Do you know if there is ANY registration on MM:ers ANYWHERE in the world?

As I´ve said before; Keep up the good work DJ, You´re my hero! Without you and your site I would be all alone with my worries and questions!

Lots of hugs to you for all your efforts!

Annica    :-* :-* ;)

Arianna never got a diagnosis of MM until November of last year.  Her vessels were 95% blocked by the time we could get her to surgery.    They really never did diagnos her with anything.  They kept looking for something genetic in the bloodwork and would not do and MRI.  She had seizures when she was 1 week old and was diagnosed with Hypocalcimia.  Her calcium went to 2--0 being dead, and her phosphorus when to 12.  Once we got that turned around we were told she should not have any problems down the road.  I think this masked a lot of her problems.  They kept wanting to go back to the HC and not look any further.  She was tentatively diagnosed with DeJorges Syndrome.  None of her blood work clarified any of it.  

What about any learning or behavioral delays?
Arianna had lots of those.

Any craniofacial deformities anywhere?  
In all of Arianna's medical records there is at  least one reference to the fact that she was "an unusual looking child".  She was.
Just some other questions?

Good idea...Cara was having these involuntary left arm movements, dragging left foot, running into walls, walking like a little drunk...at the age of 2 1/2....after a five day hospital stay full of ALL KINDS of testing...wondering why she had these plus a VERY HIGH blood pressure...found she had extra artery in her kidney...it was then they found the abnormal artery network in her brain..."MOYAMOYA" came up but it wasn't until last week they "confirmed it".  So we were and have been watching it since she was 2.5 but was definitely MM at age six.

I was diagnosed with MM at age 50

At age 18

Sean was diagnosed at 3 yrs., 7 months.

He had surgery at 3 yrs., 9 months (6 wks after diagnosis)

He was diagnosed because no other "normal" explanation for stroke fit, and one doctor at our local hospital knew of Moyamoya and suggested a CT Arteriogram to look for MM.  (This doc used to work with Dr. Steinberg when both were at UCLA).

Now, one month post-op, the swelling is gone, the sutures have disappeared, Sean is back in pre-school and doing wonderfully ... he has more energy now than at any time in his life.

THANK YOU DJ for this site and message board ... we need to continue to get the word out about MM so others can have the results we have seen!

Kelsey was 9 when diagnosed with MM

i was diagnosed with moyamoya at the age of 18 then they told me i didnt have it then at 20 they verified that it is definatly moyamoya
i was having seizures that they werent even sure if they was seizures and that was since i was about 8 i belive but now they say they were strokes that turned into seizures

My son Michael was diagnosed with MoyaMoya at age 9.  The year before that they told me he had an inoperable blood clot in his carotid (sp?) artery.  

I'd be interested in knowing how many people only have one side affected by MoyaMoya. Also, out of those people who originally had MoyaMoya on one side, how long was it before the other side was affected.

I'm very worried about my son.  He had surgery for MoyaMoya on his left side last year.  His angiogram this year revealed that the site of the surgery is only providing blood to a very small part of his brain -- not the entire half that the doctor had hoped for.  Fortunately, the other half of his brain is supplying blood to the side with the surgery.  I'm very concerned about his 'good' side being affected by MoyaMoya some time in the future.  Where will his blood come from then??

Any information would be helpful...
Thanks!

Hi:  

   I was diagnosed this last June (I think--some memory loss), but I've had seizures?? since the age of 4.  I was mis-diagnosed at 7 with Complex Migraine Seizure disorder.  

Lee

Hello,
 I had some symptons for years but, was told it was
depression and anxiety, stress........had a MRI a few years back. was told it looked fine. Then July, 2005 I had an episode of becoming very fatigued, right sided weakness with numbness, trouble speaking. Went to the ER. they did another MRI said" it looked good". The symptoms got better overnight. The next day Did an MRA
it wasn't normal. The DR. Said to me "Things are messy" on the MRA and would send me to the proper DR. to figure it out. Another trip to the hospital  a few more tests. Then home again. Went to stroke clinic at UMASS
another bunch of tests, then the angio and there it was
the diagnosis. MM      I'm 33 years old Female.
I would hear this over and over . You're young and look healthy.    Looks can be decieving. Inside My head doesn't look like the normal healthy Brain.
I am going to learn more about this, and be positive.       Thank-you for this support group        
New member Lena

Following a major stroke, I was diagnosed with mm at the age of 36.  I had been in the er 2 weeks before after passing out very briefly & feeling weak for the next few hours; I was sent home after being diagnosed as "dehydrated".  I had numb hands for several months & had "mm spells" before my major stroke, but never gave it much thought; just figured it was from overwork (which I did).  I was lucky when I ended up in the emergency room when I had my stroke that the neurosurgeon who did my angio  had seen mm once before, several years before that.  He advised against surgery because he thot it was worse than living with mm.  I didn't agree with him &, with Dr, Steinberg's help, I'm still here today, 7 1/2 years later!

Debs...that is awesome !!!!  Thank you for posting your story.    Welcome to this site...and it sure helps to have someone that had surgery that long ago.  Do you have continous follow-ups yearly.  So good to have you here.

;;D, CarasMOM

Dear Carasmom,

Yesterday I was in the shower when I thot: "did I write 36 or 46 y.o. when I was diagnosed with mm?  When I looked today, I did put 36 rather than 46, which is the right year!! (I was 46!)   Wonderful effect of a major stroke:  The right info. is somewhere in your brain even tho it may take a few days to come to the right area!!! ~~I call it the Prego spaghetti effect~~it's "in there". It's good that I can still laugh at myself!! [smiley=laugh.gif] I went back to Stanford 6 mo., 1 year, & 2 years after surgery (from WI) and haven't been back since I didn't have more symptoms & that was about the time they were having problems with getting the zenon gas for the tests.  Since then I have had lots of problems with my heart (stents, 2 bypass operations & many more blockages with 9 additional stents)  My doctors are truly amazed at how I am "still alive" with all that I've been thru~~I'm hoping for more than 9 lives...Lately, I've had more dizzyness & other tia-type symptoms but try to take things a day at a time, not knowing if it's heart or mm related.  There are really no mm doctors in WI that I'm aware of.  I also ( a year ago) went thru a legal separation from my husband so I have to find someone else to help me drive in the bigger cities.  Every day brings a new challenge !!!  Thanks for responding!

>What about any learning or behavioral delays?
>Any craniofacial deformities anywhere?  

All of the above for my daughter.  But they're far more related to her primary diagnosis of partial trisomy 6p, then to the Moya Moya.   Philina, it seems, is totally missing the main vessel that should transport the blood through the center of her brain, and she has stenosis of the supply lines through her neck too.  She was diagnosed with Moya Moya at 19 yrs of age, during a 3 1/2 month hospital ordeal of multiple complications, post aortic valve transplant surgery.  

Prior to that time, she had had 2, maybe even 3 small strokes.  But the temporary paralysis had spontaneously corrected itself so fast (within only hours in fact), that I couldn't get any doctor to acknowledge that they really were even strokes.  Initial diagnosis, as an infant, was "probable Herb's Palsy", and I was instructed to just watch her for seizure activity.  But this girl has never had a seizure in her life!  

Next known episode was at age 8, and on the opposite side of her body.   But at least this time the intake nurse in the ER got to see the paralysis, which had of course again disappeared before the doctor ever got around to seeing her.   Referred to a neuro this time, but EEG was fine, and MRI showed only some mild damage in her balance center.  Sort of a none event finding though since she was already roller skating.  

Next suspected episode around age 12.  No one actually saw this one, but she got off the school bus with a dark ring around her right eye.  Though there also had been a mini riot on the special ed bus that day, so we just naturally assumed someone had hit her in the melee.  But 10 yrs later, she's still got most of the discoloration around that eye, and some decreased muscle tone on that side of her face too.  

And her last "episode", after the heart surgery, that resulted in her diagnosis, I'm not even really sure was  Moya Moya related.   Here's the deal.  She had so many complications, and bad drug reactions after that surgery, that she ended up in an intentional drug induced coma for 7 weeks, on a heavy duty narcotic pain killer.   So when they finally woke her up, she had to be detoxed with Methadone too.   Poor kid was shaking pretty bad with DT's.  But neuro consult put her on massive doses of Phenobarbital "for seizure activity", on top of everything else.   Took me weeks to find a doctor who would even listen to me about her not needing the Phenobarb.  

Meanwhile the doctors were trying to figure out why she was unable to even smile or lift her head off the pillow.  First a repeat on the MRI, which showed the balance center problem was still there, but that was about it.  Followed up by an MRA, and a diagnosis finally that made some sense, and a feeling of real vidication for mom too.  

Open minded dr mentioned above, turned out to be the director the hospital's EEG lab.  So after about 15 minutes of looking through her old EEG reports, Dr Nespeca wrote up the order to start weaning her off of it.  She walked out of that hospital 3 weeks later, but still on fairly large doses of it, and a bit unsteady on her feet.  Once weaned all the way off though, she made a total recovery.   So who could really even tell if she'd had another Moya Moya event?  

Unfortunately, she's too old to be seen by him as an out patient, and the only neuro in his office who will see her is virtually worthless.  She doesn't even acknowledge the diagnosis as a fact, just as suspected.  Of course when I asked her for the date of the MRA, to order the report, she gave me the date for the MRI instead.  But I'd still rather keep Philina there, where I know there's at least someone in the office I trust, if we ever run into a real problem again.  

Besides, her ENT not only got me the date for the MRA, he just went ahead and made me a photocopy of both reports.  Current neuro also  has no objection to my giving Philina an aspirin daily, and neither does the cardiologist, so that's what we've been doing.   (Actually, that was recommended by a neuro at Hope Children's in Chicago during the '02  Support Organization for Families of Trisomy Conference's medical clinics...but whatever works.)   Since her episodes have always been so few and far between though, it's really hard to tell if it's been  any help or not.  [smiley=huh.gif]

Fawna

Hi all,
 Mark is 22 never had a problem until September when he got bad headaches that didn't go away.  Kept getting worse even though he was getting a whole lot of meds.  He now remembers that he was always numb or tingly in his left hand and foot.  Never thought anything of it until the headaches.  The numbness has subsided since his surgery.  Still has some other issues though.
                       Ron

I was diagnosed at 40 years old. My identical twin was diagnosed one month before me!

I was diagnosed In 1999 December 25 with CVA(stroke).But I was diagnosed in January 2000 with a disected upper right corodit artery.than in Febuary 2004 I was diagnosed with a totally occulded right internal artery from the bifurcation and left internal artery stenosis at 80% with occlusion at M1 and pre-occlusion at the A1,moyamoya vessels present.
I was 42 at stroke,I was 46 at time MM was discovered

Hope that helps. Kevin

P.s.. The first go around,Docters thougt I had FMD.

I was diagnosed in august 1999, when I was 16.

First they(the doctors) thought that I had a brain tumour, since I do have another disease called Neurofibromatosis, and that can lead to tumours,
but later they found out that I had MM instead.

People tell me all the time that I look Asian...
I haven't got it verified, but my mom has said that her father looked very Japanese-like, perhaps I'm part Japanese.

I take Atenolol for my bloodpressure, and Trombyl, making my blood thinner, so that I don't get clogged bloodvessels.

as to symptoms, I still get bad headaches, and my arms get tingly, cold, and I loose control of my right arm and leg sometimes, making it hard to walk.

I was diagnosed with MM at the age of 41 after probably 7 or 8 strokes. Tested for everything else in the world,my neurologist finally sent me to a neurovascular surgeon,and he performed the angiogram.
Dreamcatcher
Am I too late to vote ?  ;)

 daughter Jeanette, was diagnosed with MM atage 35.


                                           Shirley

I was diagnosed at age 42 (three days after a stroke), I am also Japanese.

Jan

I was 18 when I had my first stroke and this was before my diagnosis of MM

I was misdiagnosed with a disease called CNS Vasculitis which led to my second stroke the same year only 2 months later(hemorrhage)

My family does not have any Japanese decent that we know of but we are of Asian decent and are not too informed of our great grandfather's history or genetic tree

I was diagnosised at age 31.

I had all the symptoms of depression, black outs. severe headaches. I had minor TIA'd that did not registor on the arteriogram and the diamox spect tests. The doctors put me on prozac. I the had a severe earache and the doctors did and MRI/MRA and found out that my symptoms were caused by my moyamoya. I no longer suffer from those symptoms anymore.

I was 34 and had suffered 4 TIA's and another stroke that lasted 30 hrs, I went completely paralyzed on my right side. Thats why Maine General Hospital transported me too Massachusettes General Hospital where I was diagnosed with MM. Since Nov 2005 i have had 2 more TIA's and on  Jan 18th I am going too have the 1st of my 2 EDAS's done

DJ, the poll will be an amazing resource for researchers and inflicted families, as there have not been significant amount of studies about MM around.  In addition to the age of dx, gender, race and ethnicity (how much of the population is Asian decent), if they have any other family members with MM would be the basic demographic questions that will be very useful.  Are you going to have it pop up every time someone logs in?  

Alexis

I was diagnosed when I WAS ABOUT 40 and I had TIA's prior... ALSO both of my parents are Japanese. They think I had MM early on.

Thanks,
itsme

Hi Gang,

I was diagnosed with MM at the age of 46.  I am a female Navajo Indian originally from New Mexico but I live in Oceanside, CA.  I had 2 TIAs on 5/30/05.  I was misdiagnosed with MS (in Jun 05) prior to being diagnosed with MM in Aug 05.  THEN, I sent my angio films to Dr. Steinberg and he and his team disgnosed decided I have a rare form of MM Variance (not classic MM).  I am hoping to schedule surgery with Dr. Steinberg in March 06.  The "treatment" I've been on in 325 mg Aspirin and Depakote for headaches/migraines.    -Lee-

I was 34.
Thank you DJ and thank god for this site.

Oct 25 2003, age 22 stroke
Dignosed MM six mounts later
STA-MCA surgery Sep 22 2004, age 23
Whole life mild headackes,
Prior to stroke major migraine, migrains proceded stroke and surgery.
Medacations: was on Topamax and Prozac now tapering off, Still on 81mg asprin and a progestrgen(sp?) only Birth control. and I take Minquin when I have a migraine, which is now very rare.
For ethnisity I am Caucatuion (sp?) "White" Born and raised in MN, USA.
I am now 25
Becky

My daughter Molly was diagnosed on march 24, 06. She is 11 years old but has had symptoms since the age of 6mos. She will have surgery on May 26,06 with Dr.Scott in Boston.
Jo Molly's mom

I was diagnosed in 1992 though I don't quite remember the actual month.  I was 11/12 years old at the time.  I had my first surgery Aug, 1992 and had the second surgery Sept, 1992.

I've had probably 3 TIAs prior to being diagnosed and had another TIA during one of tests to determine if I had MM.  That was the scariest thing that I have ever went through.

Prior to the sugeries, I've always had terrible headaches though now I've been pretty much free of headaches.  :)

DJ thanks for putting up the site!  I didn't know there are so many people with MM.  I think it's great that we all have support for one another.

I was diagnosised when I was 28.
Love the polling ideas!,
Steph

  I was diagnosed October 2004, had bypass surgery Dec 04, suffered a stroke, then next surgeries were July 06, and Oct 05.

Emma

:o I was diagnosed at 36. I had a minor stroke in 2004.  I had my 1st surgery 05/15/06. I am doing pretty good. Have a few symptoms still. The Dr.'s are not sure why I am still having the paralysis at times. I have not suffered any new strokes and no new narrowing. Taking day by day.

Lara :D

Diagnosed 15 years after what I remember must've been my first TIA or TIA like symptoms.  I was really young when I remember crying on the bathroom floor and people getting mad at me because I wasn't talking coherently and my words were a bunch of gibberish.... My arm and leg were out of control and I just didn't feel right.  Not until over a decade later after having been through doctors and doctors and finally deciding that I needed to see whatever specialists necessary was I diagnosed.  

My daughter was almost 4 when she suffered a mini stroke.She had been treated with radiation for a tumor on her optic nerve caused by neurofibromatosis and her doctors had already mentioned the possibility of MM.When she was hospitalized (at a different hospital)for the stroke,I was the one who kept telling the doctors that I thought she had MM,they told me that she postively didn't have MM.About 1-2 months later,she was finally diagnosed.

I had a major Stroke (left side paralized) when I was 47 was DXed w/mm at 48 during 1st brain surgery I am cacaussian no family history of MM or Strokes,,,,,,,,,,,This is a good idea for everyone to put age and authenithy (sorry for the spelling) :)

I was diagnosed when I was 23, almost 24.
I have now had 2 STA-MCA's.
Things are getting better.
Pregnany now!!
I've tried to get the word out in little ways.  
The hospital I work for has done a story on my case w/ the local TV station here in Houston and want to do another one if when I give direct care to someone with MM.
People magazine is also interested.
If anyone has the opportunity to get the word out about what all of us live w/ daily please do!!!
Education is the key!!!

Hello everyone, I am so glad you are all here to get advice from.  I am 28 and just diagnosed with MM.  The thing I don't understand is everyone or almost everyone on here has some kind of sympthoms or something to idicate that there is something wrong.  The reason that they found my MM was by mistake,  I had be diagnosed with migrain headaches since I was 3 and they, went  away and after I had my first child they started to come back, and they said it was because of the hormones.  Well to put it in short version they found MM and I am really scared..

Fireflie, Not to scare you, be glad they found it by mistake it is my understanding, that they dont often find it that way rather its after a stroke, even more so in adult Patients. We have been fighting symtoms in Robert for close to 4 years and we had the orginal diagnoisies of Complicated Migranes,

Take it for what its worth God is smiling down on you

I was 34 when i was diagnosed with MM. But they did trace it back that my father is the carrier too the MM gene because of his background of American Indian..Apache on his fathers side and Cherokee on his mothers side.Now since i have 11 strokes and 3 seizures.

Laura

Hi Firefly,

I just now saw your post under this thread and had to say that I agree with Mike, I think it’s a blessing that your MM was found accidentally, thank God! We don’t get to hear that very often. We see all too often it’ being under-diagnosed, misdiagnosed or after a stroke. It seems no two cases are alike because of the many individual factors involved, but all having the same risk factor of a stroke.

My niece, like you, did not have any obvious symptoms either, not even headaches. When I look back, the only thing I remember is, one day a few weeks before her strokes, she said she could not hold a pen, and now in retrospect, that was a sign, but who would of thought it was a sign that a 20 year old was about to have four devastating strokes that would change her life forever? It left her in a coma, paralyzed and on a feeding tube. MMD can be a silent and devastating disease if not diagnosed and treated promptly. So although it saddens me to hear your diagnoses, it pleases me that it was found before any damage. You are very fortunate!

The good news is, it can successfully be treated, but the bad news is, it’s not a familiar disease in the medical community yet. It’s very important that you find a doctor that’s experienced with MMD and knows the proper approach for your case.

Mar

    the more I read the more diversity of symptoms,or lack of in some cases, I see.In hindsight there were some very very small signs in Kathleen(she was almost 5 at the times),but I would say only a month or so in advance of her first stroke.I think the fact that she also has Down Syndrome made it a little more difficult to see.The first sign would be that her PT noticed that she was walking different in that she was "slapping" her feet harder KWIM? Then one day at Pre School the teacher said she was very tired in fact she was sitting at circle time and put ehr head down and as they said "she didn't come back up she was asleep".I know now that this was probably an "episode" of some sort but who'de of known at the time especially people who aren't used to seeing Kathleen.Then, around Christmas time I noticed that whne I dressed her she was hanging onto me so hard like she was afraid she was going to fall.I would try to tell her to let go she can stand on her own but she insisted(now theres some real mommy guilt left over that I must say).This progressed to her being wobbly walking,and jsut standing still sometimtimes.I thought at that point she had an inner ear problem and we went to the Dr.She didn't so they tested her thyroid(this can cause you to be off balance).finally what really got my attenetion and theirs was when she had a hard time using one arm and then wouldn't stand up this is when we took her to the ER.By the next day she coyuldn't even sit up.She then had several more seriouse strokes.the progress of this disease seems as diverse as the onset on different people.She went down hill in a matter of a few months some can live practically symptome free for  years.Will the medical profession ever get answers about this disease?
Mary Grace

Oh Mary Grace . . . you struck a chord with me when you spoke of the "mommy guilt".  There are a couple of incidents, one in particular, in Tara's younger years that I think we should have acted on.  The first - she was 11 and a synchronized swimmer at the time.  We were at one of her competitions.  She had gotten up with a fever that morning, but insisted on swimming, so we dosed her up with Tylenol and allowed her to compete.  In the middle of her duet competition, she suddenly was unable to stay above water.  She stopped, and managed to use her arms to get to the side of the pool.  Scared us half to death, but once out of the pool, she was o.k. within just a few minutes.  She described not being able to feel her legs when she was swimming, but we ended up chalking it up to the the fact that she seemed to have some sort of bug.  We'll never know for sure, but I think it was probably her MM.  The other incident occurred when Tara was 15.  She was sitting on her bed talking to me, and suddenly toppled over to the floor.  She immediately "came to" and we once again blew it off as a flukey thing.  Her only other symptom was the migraines she was diagnosed with at age 6.  Hindsight . . . . . why can't we have it sooner???

Believe me, I've beaten myself up over things, too, but what's important is that we've now taken care of the blood flow problems our kids had.  I worry about those who have been diagnosed with MM and don't pursue treatment.

[smiley=heart.gif] Jill

    Jill thanks for your response,I'm not the only mom carrying a little guilt with me.Most of the time I know it's really not rational ,but sometimes I just have to wonder if I had acted sooner would the outcome be different.Especially when I see pictures of Kathleen before her strokes.Hindsight is great if you can pass these little things along to others to use, but it sure does lend itself to some guilt when you let it.Most of the time I'm just happy she's here and alive and happy.Thanks Jill,I'm not alone, and this site always reminds me of that fact.
(((((((((HUGS)))))))))
Mary Grace

LOL although I dont have any daddy guilt with regards to MM, the potential was there, I was recently given 6 days to plan our trip to stanford, I was told on the phone that if that was not doable it could be done the end of November.A distant family member said youve waited this long whats 6 more weeks..............My thoughts were we have the premeir surgeon juggling to get him in ASAP, That states the urgency, and if we waited and something did happen how would we live withourselves
Mike

Mike your so right.Even though some people live a long time without a seriouse stroke it's a gamble that I would never take.In Early March of 02 kathleen was scheduled with Dr. Scott forJune.She had had her angio and it really didn't seem urgent but, about 2 weeks later she suffered another stroke.This is when Dr. Scott squeezed her in, in April.The day  we were driving to Boston she had another stroke (the day before surgery) it was decided to go ahead with surgery even though she had had a stroke because she was obviously declining very quickly.She had 2 more strokes between surgeries which were severe.Your right NO one should wait it would be like playing Russian Roulette in my opinion.Good for you, who wants to live with that guilt?
Mary Grace

I am new to the web site and message board.  My daughter was diagnosed yesterday at age 15.  She had been complaining of numbness in her left arm for the last year.  this summer it progressed to her entire left side and would last only a minute or 2.  I finally took her to a pediatric neurologist and the MRI gave us  the diagnosis right away.  She goes monday for an appointment with neuro surgeron (pediatric) in atlanta.  There is no history of this in either family and we are of typical anglosaxon background.  We are all still in shock.  The MD nor I thought they would find anything.  I am grateful to have found this website.  Thanks her worried mom.    :o

Dear Rosemary,  
 
Welcome to our family!  I am sorry about your daughter's diagnosis, but very glad you've found your way here!  This is a great place to learn about MM, and there are some wonderful people here, all who have traveled this road in one way or another.  
 
I am the mom of a 19 year old girl who was diagnosed and had two bypass surgeries in May/June 2004.  We consider ourselves very fortunate that our daughter had had "only" two small strokes prior to surgical treatment.  
 
The best thing you can do for your daughter is to read up and educate yourself about this disease.  As you become more familiar, you will understand that this is not a "wait and see" disease.  It is progressive, and ideally surgical treatment is obtained PRIOR to the damage that may be caused by a devastating stroke or hemorrhage.  
 
I don't know the details of your daughter's history, and I am definitely not a medical professional.  Unfortunately, the majority of the medical profession is just not well educated about MM.  A wait and see stance is not uncommon - be very aware of this.  The question you have to ask is, what are they waiting for?  This is a progressive disease that won't get better or improve with medicinal treatment.  The true experts, doctors who see it on a DAILY basis, are few and far between.  The leading specialists are located at Boston Children's (Dr. Michael Scott) and Stanford (Dr. Gary Steinberg).   Dr. Steinberg operates on both children and adults, and Dr. Scott primarily sees pediatric patients.  Both are happy to offer an opinion.  You might want to seriously consider sending your daughter's test results to one of them for a recommendation.  Another consideration to add to your thought process - the experts have anesthesia and nursing teams who see MM on a daily basis.  This is very important, as the neurosurgeon is just part of the overall care.
 
I don't want to frighten you, but as a mom, I'm sure you don't want someone who just dabbles with this disease to treat your daughter.  With the lack of MM knowledge amongst the medical profession, it is not unusual for people to have to travel away from home to seek good medical care for this disease.  I've met many people from out-of-state and out of the country who have come here (California) for treatment by Dr. Steinberg at Stanford.  It is commonplace - almost 400 surgeries (amazing when you consider that MM supposedly occurs in 1 in every 2,000,000 people!).  Dr. Scott also treats patients from all over.

To be forthright, I must say that I now work for Dr. Steinberg at Stanford.  After going through my daughter's surgeries, recovery, and then (on a volunteer basis) becoming very involved in supporting MM patients coming here from out of town, my job with them just kind of evolved.  Suffice it to say that I was so impressed with the program, becoming part of it seemed exactly what I was meant to do.  From a personal perspective, Dr. Steinberg is definitely my hero!  
 
Good luck to you as you continue the education process.  You and your daughter will be added to my prayers.  Please don't hesitate to ask questions (you'll have a million of them!), and I hope you can decide on a plan of action that seems to best suit all of you.  
 
Warmly,  
Jill  

I would have to agree wholeheartedly with Jill's assessment of other neurosurgeons and neurologists.  When our daughter was diagnosed about 2 years ago, we had see 3 neurologists and 1 neurosurgeon before the we found the proper diagnosis.

Glad to say that we found this "community" and it has been a godsend to discover Dr. Steinberg.  Breeana had 2 surgeries (Direct & Indirect) in April/May 2005 and we thought she would be ok.  Now, almost 2 years later, the left side (did not have any surgery) has progressed to the point where she might need a direct bypass.  

What confounded my wife and I was that Breeana had a MRI/MRA done in August 2006 and our pediatric neurologist (from a world renowned hospital in Southern California) said he could not find anything wrong with her scans - no new strokes.  Luckily, we sent the scans to Dr. Steinberg for he and his team to review.  It was then that they found the left side has progressed.  Soon after getting the preliminary diagnosis, Breeana experienced an episode similar to the ones she had prior to the surgeries.  Because of this, it has prompted a near urgent round of testing to occur next week.

Why I wrote the above is to make a point about making sure to see doctors who have experience diagnosing MM.  We went through countless doctor visits and other tests before we found out.  Hopefully, others won't have to go through the trials and tribulations a lot of us have gone through.