hi im a new member my name is jane i come from West Yorks in England.
My daughter Chloe was diagnosed with moya-moya when she was 1 she is
now 5 nearly 6. I would ike to hear from any other parents please.

Hello, sorry it took so long to respond but I havn't been on the comp.
much.My daughter was diagnosed at 4 and had 2 surgeries, and 5 strokes.She is
doing
great since the surgeries and has had no new strokes.She is now 6 and
regaining what was lost in the strokes.How is your daughter doing now.Would love
to
hear about your experience.
Mary


[Non-text portions of this message have been removed]

Everyone,

I emailed with a few of you back in late August and early September and the
information you all offered was invaluable.  After communicating with Dr. Scott
and having my daughters films reviewed by Dr Scott and the radiology staff at
Boston Children's, we scheduled her surgery.

Allison is 8 years old,  has NF1 and was diagnosed with 100% occlusion of the
Right Middle Cerebral Artery back in July/August.  The doctors at Children's
National Medical Center in Washington DC did not list it as Moya Moya but Dr.
Scott and his staff said that for all intents and purpose, it is Moya Moya.
The only single difference is that the colleteral vessels did not appear as a
puff of smoke.

The surgery was last Tuesday morning (11/4).  She spent one night in
intensive care, and on Wednesday morning, (24 hours after surgery) she was
actively
flipping channels on her TV, raising her bed up and down, flipping from side to
side in the bed and even trying to eat breakfast.

By Thursday morning (48 hours after surgery) she was painting a jewelry box
in the activity room, and walking around the hospital.  She never even napped
on Thursday.

By Friday, she was on nothing but tylenol for the discomfort, she painted the
windows of her room with balloons, ate breakfast and was released by noon,
(barely 72 hours out of surgery).

By Saturday....she did not even want tylenol....she said she didn't need
anything.

Today (Monday 11/10) she woke me up begging to go to school.  That was the
clencher when I knew she was still sick....no child begs to go to school.

Dr Scott is incredible....and had I not found this webgroup, and learned of
Dr. Scott, I might still be following the advice of a doctor a CNMC which was
to watch and wait since she had not had a stroke yet.  Pretty bizarre if you
ask me.....and everyone who I share that with agrees.....How could any doctor
ever suggest that you wait and watch for your child to suffer a stroke????....

I just wanted to convey my thanks to you all for your advice and
encouragement.  After finding Dr. Scott, and reading these postings....I just
relaxed....my fear subsided and I knew I had found the answer and everything
would be
OK....and so far it has been....and I have faith in the future....as long as Dr.
Scott is in the picture.

Thanks Everyone,
Julia Kempe


[Non-text portions of this message have been removed]

Julia, so glad to hear everything went so well for
your daughter, Allison.  I'm also glad you didn't
"wait for her to have a stroke" -- how ridiculous!  My
daughter is doing very well, but I do wish we could
have had surgery before she had any strokes.

So, did you let her go to school?????

Thanks for sharing your terrific news.

Denyse

--- mdkempes@... wrote:
> Everyone,
>
> I emailed with a few of you back in late August and
> early September and the
> information you all offered was invaluable.  After
> communicating with Dr. Scott
> and having my daughters films reviewed by Dr Scott
> and the radiology staff at
> Boston Children's, we scheduled her surgery.
>
> Allison is 8 years old,  has NF1 and was diagnosed
> with 100% occlusion of the
> Right Middle Cerebral Artery back in July/August.
> The doctors at Children's
> National Medical Center in Washington DC did not
> list it as Moya Moya but Dr.
> Scott and his staff said that for all intents and
> purpose, it is Moya Moya.
> The only single difference is that the colleteral
> vessels did not appear as a
> puff of smoke.
>
> The surgery was last Tuesday morning (11/4).  She
> spent one night in
> intensive care, and on Wednesday morning, (24 hours
> after surgery) she was actively
> flipping channels on her TV, raising her bed up and
> down, flipping from side to
> side in the bed and even trying to eat breakfast.
>
> By Thursday morning (48 hours after surgery) she was
> painting a jewelry box
> in the activity room, and walking around the
> hospital.  She never even napped
> on Thursday.
>
> By Friday, she was on nothing but tylenol for the
> discomfort, she painted the
> windows of her room with balloons, ate breakfast and
> was released by noon,
> (barely 72 hours out of surgery).
>
> By Saturday....she did not even want tylenol....she
> said she didn't need
> anything.
>
> Today (Monday 11/10) she woke me up begging to go to
> school.  That was the
> clencher when I knew she was still sick....no child
> begs to go to school.
>
> Dr Scott is incredible....and had I not found this
> webgroup, and learned of
> Dr. Scott, I might still be following the advice of
> a doctor a CNMC which was
> to watch and wait since she had not had a stroke
> yet.  Pretty bizarre if you
> ask me.....and everyone who I share that with
> agrees.....How could any doctor
> ever suggest that you wait and watch for your child
> to suffer a stroke????....
>
> I just wanted to convey my thanks to you all for
> your advice and
> encouragement.  After finding Dr. Scott, and reading
> these postings....I just
> relaxed....my fear subsided and I knew I had found
> the answer and everything would be
> OK....and so far it has been....and I have faith in
> the future....as long as Dr.
> Scott is in the picture.
>
> Thanks Everyone,
> Julia Kempe
>
>
> [Non-text portions of this message have been
> removed]
>
>


__________________________________
Do you Yahoo!?
Protect your identity with Yahoo! Mail AddressGuard
http://antispam.yahoo.com/whatsnewfree

Thanks for your email.
No, I kept Allison home.  I am off work for a few weeks to care for her and
we are doing school work at home.  We were extremely blessed in that we found
out about the Moya Moya in a routine MRI which is done because of the NF1.  I
guess in a roundabout way, that could mean I'm grateful for the NF1.....but
that would be stretching it.     Allison went to visit kids (and teachers) from
her old daycare today and got lots of hugs.  That was good for her.  Please
tell me again how old your daughter is and what her history was.....How is she
doing now?  Is she still suffering any affects?  What kinds of difficulties?  I
am so interested in all of this now, since only a few months ago I'd never
heard of it.....I wish Health Insurance companies would approve doing those
"Whole Body Scans" (which are either CAT scan or MRI scans but can identify
problems before they develop...They should just do them routinely every 5
years.....

Take Care, Julia


[Non-text portions of this message have been removed]

Julia, you are so lucky that you found the Moya moya before your daughter had
a stroke. i so wish we could have known soon enough to prevent Kathleen's
strokes.She had five strokes and lost all use of her left side.Dr. Scott is such
an awesome Dr. We are so grateful he could do her surgery. I know she would
not be here today if it weren't for the surgeries.It's so encouraging to hear
how well your daughter is doing after surgery.Kids are just so resiliant.Your
story is such an inspiration to new parents facing surgery for their children.
Mary


[Non-text portions of this message have been removed]

Michelle,

      I sometimes feel guilty that Allison never suffered a stroke or TIA as
most children do before diagnosis is possible.  I actually stopped emailing on
the moyamoya group for a while because I felt guilty....but it occurred to me
that if it had not been for the incredible encouragement I received from the
other parents, that I would never have relaxed and felt so secure in my
decision to see Dr. Scott, and even though I knew we were blessed, by hearing
the
other stories....I know just how very blessed we are.

      Allison's surgery was in the morning and I am certain he had another
surgery that afternoon so you must have met with him in between.  I think we
talked to him around 12:00 or 12:15 after he came out of surgery.....he must
have
gone right into see you guys.

      I think he is amazing.  I don't know where he finds the energy to keep
up the schedule he keeps.  Allison was admitted on Monday 11/3 for pre-surgery
IV hydration.  He came to see her after surgery and it was 9:00 pm.  Her
surgery was at 7:30 the next morning.  He does 2-3 surgeries a day I think, plus
returns phone calls and emails.  He apologized to me for the hospital being so
full that it took longer than usual for Allison to get from Recovery to ICU and
then from ICU to a regular room.  It amazed me because it certainly wasn't
his fault....but I think he cares so much about the kids and the families that
he just wants everything to be "Just Right".  He is an incredibly rare human
being.  My Aunt from North Carolina has read about him and seen some of his
emailed replies to us and she says "He is just precious", because most doctors
don't take the time he takes to attend to the little details.

      I am so glad that he was able to schedule your son's surgery relatively
quickly.  When my daughter was first diagnosed, I was petrified.  The doctors
couldn't give us answers and I just envisioned the worst and it was all I
could do to keep from crying when I looked at her.  After I found Dr. Scott and
this webgroup....I lost all fear.  When you hear nothing but great things about
a person, it really helps eleviate the fears.  The nurses at Children's were
wonderful too.  I know that everything will go great for your son and his
future will be bright.

      Allison and I went shopping yesterday for craft projects....she's
anxious to get started....then we have school work to work on for a while.  The
nice
thing about this is while she is home recouperating...(having fun while the
inside of her head heals) ...and I am home with her, we are really enjoying our
one on one time together.

      Keep me up to date on how things go for David.  And when you see Dr.
Scott next week....if you think about it...tell him "Allison Kempe is doing
great
and sends hugs".

Take care and good luck,

Julia


[Non-text portions of this message have been removed]

Hi Li.

I hope you had a great Thanksgiving.  Ours was nice.  We spent it at my
brothers house.  I sometimes rush through my emails but I think I should slow
down
and learn a little more about what your families situation has been with
regard to your daughters health.  Of course I'm not a doctor or anything but I
have
done alot of research and talked to alot of people about this Moya Moya
situation so I feel like I know quite a bit....but it's only thanks to other
people
helping me to.

First, My daughter Allison (who is 8) asked me to tell you "Everything will
be fine.  Dr. Scott is the most sweetest doctor.  The food at the hospital is
great.  After a few days, your daughter will feel just fine.  They will give
her pain medicine so she won't hurt.  There are activity rooms where she can go
to do arts and crafts, paint pictures, color, decorate jewelry boxes or bird
houses and even borrow video tapes to watch in her room.  She will be amazed at
how fun it can be."

      Now....as to my opinion....I have questions and answers....but here
goes....
First, we found out that Allison has a narrowed artery in her brain during a
routine MRI scan that was done in early July.  We thought the doctors must be
wrong because Allison was full of life, having a great time, laughing, playing
and not acting odd at all.  They did an MRA which confirmed the first test
and indicated that there was not enough blood flow to part of her brain.  Then
they did the Angiogram which confirmed that the Right Middle Cerebral Artery
was 100% blocked.  No blood whatsoever was getting through.  The brain had tried
to compensate by creating other vessels but the other vessels were small and
would not carry enough blood to properly feed her brain.

      Allison was already suffering from some learning difficulties and I
wondered if this might be the cause or a contributing factor.   Allison also has
a
neurological disorder known as Neurofibromatosis Type 1 (NF1).  You would
never know that she had anything else going on because she is a very normal
little girl.  It was because of the NF1 that they did an MRI in the first place.
Allison never suffered any symptoms whatsoever.  They do routine MRI's every 3
- 5 years and that is how this was caught.  If it weren't for that, we may
still not know there was anything wrong, or she may have suffered a stroke by
now, so we feel very blessed.

When this all began, and through the whole ordeal, my husband could not talk
about it.  It was too upsetting to him.  He kept thinking that they would call
us up and tell us that they had made a mistake.  After my initial reaction of
crying and feeling petrified that I was going to lose my daughter, I dealt
with it my researching on the internet for hours and hours every night until I
found enough information, and found Dr. Scott and this webgroup, and knew I
understood this enough to make sure my daughter had what she needed.

I found lots of reports on the National Institute of Health website and read
lots of clinical reports that went back 20+ years.  In some cases it involved
children and many others involved adults.  20+ years ago, many or perhaps most
patients died.  Gradually a few experimental surgical procedures were
developed  and there are several differant procedures still performed but Dr.
Scott
has perfected his procedure and is literally world renowned for his skill and
the miracles he has performed on so many children.

I read about a woman in Finland I want to say, (not certain now) whose child
was diagnosed with Moya Moya a few years back and her doctors had no idea what
to do.  With Moya Moya, the arteries become blocked at the very beginning of
them which is in the center of the brain so it's not really possible to reach
those arteries to unblock them.  Dr. Scott provided instructions for her
childs surgeon and the procedure was done.  Her child is doing well now.  I read
about another child in (Michigan or Minnesota?) whose child was diagnosed with
Moya Moya and Dr. Scott happened to be visiting the hospital at the time.  He
stepped in and performed the surgery, at the same time demonstrating the
procedure to other doctors so that they could learn how.

For us, our doctors could not agree on what to do.  They suggested that since
Allison had not had a stroke, we should just watch and wait.  I read many
many reports that indicated that the more neurologic damage existed, the less
fully the patient would recover even after the surgery.  The only way to reduce
that risk of neurological damage, is to have the surgery as soon as possible.
The longer that children have the condition and don't have the surgery to
correct it, the greater their risk of stroke and the greater amount of
neuroloical
damage the children suffer.

I have spoken with many parents who did not find out about their children
having Moya Moya until after they suffered strokes.  Many of these children are
still struggling to regain normal speech, cognitive ability, even the use of
their limbs.  It is my understanding that once the brain suffers damage, it
cannot be repaired.  Thankfully children can relearn and correct many of the
physical problems because other parts of the brain will eventually take over but
I
believe from the people I have talked to, that it is very very difficult and
takes a long time.

As I've mentioned, Allison was happy and healthy and full of life before her
surgery and....was out of the hospital only 72 hours after surgery, happy,
healthy and full of life and on NO PAIN MEDICATION.

The thought of Brain surgery is scary....it's overwhelming at times, but
those few days that the children are in the hospital, having this surgery and
being cared for by a fantastic staff, is nothing when compared to the risk of
not
doing it.



>
> 2. I haven't mention anything about the surgery to my daughter. Is it better
> to tell her now or wait till we reach the hospital? How did you handle it?
> I forget how old your daughter is....but with Allison, we told her a little
> at a time.  I don't think I would tell her yet that she will have surgery but
> perhaps talk to her a little about things she can relate to....like the
> doctors appts or headaches or whatevery symptoms (if any) she has had.  We
told
> Allison about a week beforehand.  We answered all of her questions, gently and
> honestly but never offered more information than she asked for.  I think if
> you tell them too soon, or if they sense fear in you or your husband, it could
> make them nervous and scared also.
>
> 3. You said that the surgery is very serious. Is it very risky? Will a
> patient have stroke during the surgery?  I think all surgery is seriuos, and
any
> surgery can be risky, but this surgery is probably the least risky that any
> brain surgery could possibly be.  It does not involved any real invasiveness
to
> the brain itself.  It's not like removing a tumor.  I think the seriousness
> and risk are very minimal when compared to a surgery like removing a tumor.
> I think that Dr. Scott said that there is a slightly increased risk of a
> stroke during or immediately following (1st day) after the surgery but that
> really is only when the patient has been suffering continual stokes immidately
> prior to the surgery.
>
> 4. After the surgery, will the child have a chance of getting a stroke?
> Aside from the first day or two, I believe the risk decreases with each day
that
> passes.   If everything goes well and the new vascular development occurs
> like it should, the risk should be nearly completely gone after about 6
months.
>
> 5. Did your daughter have one side operated, or both sides? Is it better to
> have both sides done at a same time, or wait for few more months?  My
> daughter only had blockage on one side so only surgery on one side.  I have
talked
> to others whose children had surgery on both sides.  I have been emailing with
> a Mom whose sone had surgery on both sides just about 10 days ago and from
> what I hear, he is doing great.  They say it's better to do it all at once
> under one anesthetia rather than to have them go through it all a second time
> and a second anesthetia.
>
> 6. Do we need to stay in Boston till the staples will be removed? Or we need
> to find a local doctor to do so.  Dr. Scott does not use staples.  He uses
> dissolvable stitches.  They will dissolve on their own in about two weeks or
> so.  Allison's did not completely disolve/fall out for almost 3 weeks.  I
> think part of that depends on how often you wash your childs hair.  I only
wash
> her hair 2-3 times a week because her hair is dry.  You can't wash it for the
> first week following surgery and that's to give the scalp time to heal well
> before you start getting the dissolvable stitches wet.
>
> 7. How many days will my daughter stay at home after the surgery?  Dr. Scott
> recommends 3 weeks but as a rule of thumb, they say 2-4 weeks.  Allison
> wanted to go back to school only 6 days after the surgery, but we kept her out
> for two full weeks after going home, about 2 1/2 weeks after surgery.
>
> Sorry for bothering you so much. You have made me feel better now.  Please
> don't apologize for asking questions, you are not bothering me at all.  I was
> lucky enough to have parents there to answer my questions and am more than
> happy to try to help any way I can.

You should also go look at this weblink.  It has alot of information and I
think Dr. Scott wrote it.

<A
HREF="http://www.boston-neurosurg.org/publications/faq/moyamoyaRMS.shtml">http:/\
/www.boston-neurosurg.org/publications/faq/moyamoyaRMS.shtml</A>

PS....Please tell me more about your daughters diagnosis....how you found out
etc....

Also, you are welcome to look at my daughters website if you like.  It's
"www.allisonk.info".  My brother set it up for us so that we could keep
family and friends updated with what was happening without having to call or
email alot of people.

Take Care....

Julia

PSS...Sorry this is so long.....

>
> Regards
>  Li
>
> MDKempes@... wrote:
>
> >> Hi Again,
>>
>> Sorry I didn't answer all of your questions....I just feel very strongly
>> about taking care of the problem before something happens.  I have heard so
>> many sad stories.  The surgery is somewhat serious...but no where near as
>> invasive as you would think of brain surgery being.....it's not like removing
a
>> tumor or anything.  I am sure Dr. Scott will take good care of her and she
>> will be fine.  I'll email again later....got lots of house work to do.  My
>> daughter goes back to school tomorrow and I head back to work.
>>
>> Take Care,
>>
>> Julia
>
>


[Non-text portions of this message have been removed]

Julia,
Well Done!  My son was 11 when he had his surgeries. He had them done by Dr.
Steinberg in CA. They were done a week apart and he did have staples. With
staples Dr. Steinbergs office made sure that we had an appointment with our PC
(Primary Care) to have them removed after we got home. Tyler had his surgery in
the summer and was swimming about 2 weeks after the second one.
The kids heal fast and by what I know the adults do to, this is a wonder
surgery. It does so much for the patient and seems so serious, then it's done
and life returns to normal faster than you would believe possible. It has been
about 5 months since Tylers surgeries, he has almost regained the use of his
left arm (which he lost due to a stroke last December) and he acts like a normal
12-yr-old.

Li Know that by my research Dr. Scott and Dr. Steinberg are the best out there.
Your child is in good hands. Your family is in my prayers.




---------------------------------
Do you Yahoo!?
Free Pop-Up Blocker - Get it now

[Non-text portions of this message have been removed]

Thanks for your response.  For those of us who have been through it, we know
the miracle of it, but for those just getting the diagnosis....they are in the
fear and devestation mode as we also were.  Just knowing that there is a
solution and in the grand scheme of things, it's so simple is the most wonderful
part.

I'm glad your son is doing so well.  Allison had her surgery on 11/4 in
Boston and is doing fantastic.  We had alot to be thankful for this
Thanksgiving.
I have a daughter around your son's age also...She is 13.  I need to get an
MRI scheduled for her to be sure she is not developing the same thing.  Moya
Moya is more common in children with Neurofibromatosis and both of my daughters
have NF.

Take Care,  Julia


[Non-text portions of this message have been removed]

Julia,

So glad to hear that Allison is doing so well.  We are heading up to
Boston for our two kids annual MRI's with Dr Scott.  We too live in
the D.C. area and I was curious as to who your neurologist and the
neurosurgeon you have at Children's.  Our kids see Dr. McClintock.
We love Dr. Scott and can't say enough about him.  The kids can't
wait to see him when we go.  Keep us posted on Allison.  Thanks,
Heather


--- In parentingchildrenwithmoyamoya@yahoogroups.com, mdkempes@a...
wrote:
> Thanks for your response.  For those of us who have been through
it, we know
> the miracle of it, but for those just getting the diagnosis....they
are in the
> fear and devestation mode as we also were.  Just knowing that there
is a
> solution and in the grand scheme of things, it's so simple is the
most wonderful
> part.
>
> I'm glad your son is doing so well.  Allison had her surgery on
11/4 in
> Boston and is doing fantastic.  We had alot to be thankful for this
Thanksgiving.
> I have a daughter around your son's age also...She is 13.  I need
to get an
> MRI scheduled for her to be sure she is not developing the same
thing.  Moya
> Moya is more common in children with Neurofibromatosis and both of
my daughters
> have NF.
>
> Take Care,  Julia
>
>
> [Non-text portions of this message have been removed]

Hi Heather,

Thanks for your email.  I would love to hear more about your kids situation.
Our Neurologist is Dr. Tena Rosser and the Neuro-Surgeon that we saw once was
Kimberly Bingaman and we also saw Dr. Keating once briefly after Allison's
Angiogram.  Dr. Scott is a great man....and acts like he's just an ordinary Joe.

He is amazing.

Take Care,

Julia


[Non-text portions of this message have been removed]

Li,

I am trying very hard to figure out how all of this came about for you and
your daughter.  You said she had headaches and trouble seeing and that she had
an MRI which diagnosed her with Moya Moya.  Has Dr. Scott seen the MRI films
from the MRI?  Was it a Neurologist or Neuro-Radiologist who diagnosed the Moya
Moya?

I am not a doctor and cannot tell you what to do, but I can tell you how I
feel. When my daughter was diagnosed with Moya Moya, one of the top doctors in
the hospital told me, "She has not had a stroke yet, we should just watch and
wait".  In otherwords, just keep waiting until she does have a stroke, and then
we'll think it's serious enough to do something about.

There is no way to know how long it might have taken for my daughter to
suffer a stroke, ....but I know what the results of a stroke can be, and you can
learn alot more from parents whose children suffered strokes before they even
found out about the Moya Moya and had the opportunity to fix it.  Many children
are still trying to get their lives back to normal because they did have
strokes and suffer brain damage before having the surgery.  After having the
surgery, they have had no more strokes.   Strokes are serious and cause
permanant
damage to the brain.  People can lose the ability to walk, talk, use te
bathroom, think, read, and all kinds of very serious injury to the brain.

For myself, our family, I felt like we were blessed to know ahead of time and
have the opportunity to fix it before my daughter had a stroke.  No one wants
their child to have brain surgery, but I promise you and every other parent
on the Moya Moya website would tell you, that having Dr. Scott fix it as soon
as possible is the only thing that makes sense.  If you wait, the risk of a
stroke increases with each day.
You do not want that to happen to her.  You don't want her to have surgery,
but the alternative of not having it is worse.

Your pediatrician knows you are scared and I am sure he was trying to calm
you down.  The best person to talk to is Dr. Scott.  Dr. Scott has seen many
many many children with Moya Moya and he knows how serious the situation can
get.
  Also, if he saw your daughters MRI, he knows how important it is to have the
surgery or I promise you he would not do it.  When he first saw my daughters
MRI, he said he did not think the surgery was necessary right away but that we
should monitor it.  Later, after the radiologists at his hospital reviewed
the MRI scan and met with him to review it, it was decided that there was not
enough blood flow and we should go ahead and do surgery.  Dr. Scott initially
put it off because he did not think it was necessary.  If it was not necessary
for your daughter, he would tell you that.

Moya Moya is not a tumor.  It is not like removing a growth from her brain.
It is very simple.  They will make an incision on her head in front of and
above her ear, they will make a small opening in the bone, he will take an
artery
that is right there in her scalp and separate it from the other tissue on her
scalp.  He will use a special microscope and take the artery through the hole
to the surface of the brain.  He will very carefully open up the outer
covering of the brain (just a thin covering called the dura).  He will use tiny
little stitches to attach the artery to the surface of the brain, barely even
touching the brain, then close everything back up.

Please remember, your friends are not doctors and they do not know what Moya
Moya is.  Moya Moya will continue to develop and cause arteries that carry
blood to the brain, to close.  If you don't create the new blood flow pattern by
attaching the new artery, then eventually, maybe a month, maybe 6 months,
maybe a year or even 2 years, the blood flow will reduce to the point that your
daughter has a stroke.  I know you don't want this to happen.

I did not want to wait because it was a gamble I was not willing to take.  I
cannot predict the future and I would have no way of knowing how much time my
daughter had before she would suffer a stroke.  I could not gamble with her
health.  The better of the two options was to fix it so we never had to worry
about it again.  Now I can
relax because I don't need to worry any more.  I can watch her run and play
and laugh and know that she is safe.

Li, I really don't want to scare you....but I must say that I get scared when
you say that you are thinking about not doing it or that your friends or
family are suggesting that you not do it.  Everyone knows that you are scared
and
they are worried about you also and I am afraid that they are saying the wrong
thing, to try to make you feel better.  They need to understand Moya Moya
before they tell you to not do the surgery and if they do understand it, I know
they will tell you the same as I am telling you....fix it now to protect her
future!

I am sorry if I scared you more by saying this....I would suggest that you go
to the "ParentingChildrenwithMoyaMoya" website and read more of the stories.
These parents told me in August...."Get it done and get it done NOW!!!"  I
took them at their word and I think you should too.  Dr. Scott won't let you (or
him) do anything that is not necessary to keep her safe.

I know Michelle will help you since her son had surgery on both sides.  Read
more of the webgroup messages and I think it will help you understand that
there really are no options.

Take Care, I am praying for you all.

Julia


[Non-text portions of this message have been removed]

Dear Friends,

I have heard many of your stories and know how grateful we are for Dr. Scott
and the miraculous surgeries he has performed on our children to treat the
Moya Moya.  I know many of the stories about what you all have suffered with
your
children.  A fellow parent that I have been corresponding with is very
scared.  Her daughter is scheduled for surgery on both sides in December with
Dr.
Scott but some friends and family are trying to tell her to wait and just leave
her daughter alone for right now and do it when she is older.  She is confused
and doesn't know the best thing to do and is very afraid that it will be an
awful experience for her daughter, and her daughter is scared also.

I have provided her alot of info but she could really use the encouragement
and reassurance of all of you who have been there and felt the fear and then
seen the miracle of Dr. Scotts work.  Please email Li with information about
what your experiences were.  I know it will help her feel more sure about what
she is doing.

(lichan196@...)

Thank you all so much.

Julia


[Non-text portions of this message have been removed]

Hello Li,  I have not had the pleasure of seeing Dr. Scott.  I am from Florida
so we see a doctor at the University of Florida ( Shands)  Dr. Mickle did my
daughters surgery when she was 11mths old in 1998  When she was diagnosed no one
in Florida knew anything about this disease  I was not even aware of this
website my husband and I tried to get as much research on this as possible but
back then there was not much on Moya Moya.  Today there is a lot of information
on this.  My daughter suffered a severe stroke after the surgery but before they
were not visible however when the doctors looked a the angiagram they said she
should be paralized but she was not.  The stroke set us back a great deal
however we recovered from it and then in 2001 Dr Pincus did the surgery on the
other side of the brain and she had another stroke which the doctors said she
would not ever recover from she lost her speech for the second time she was not
able to eat, drink, swallow,  she could not even use her
  tongue.  it also made her unable to sit alone walk without someone holding on
to her.  She is now 6yrs old she is able to talk just like a 3yr old she can
walk,  run, and do most things a normal child can do.  We do have to watch her
because anytime she gets very upset she will have a TIA  most of the time they
only last 5mins to 6hrs.  we have to watch other children around her so they do
not hit her head because we were told that that could be very harmful to her oh
by the way she can also now eat on her on drink out of a cup without help.  I
only have to feed her when she gets sick and won't eat.  I have heard a great
deal about Dr Scott and if he is going to do the surgery then I say go ahead now
before something happens and he can't do the surgery.  We were told if Samantha
had a stroke before surgery they would not be able to do it if she was sick they
would not be able to put her to sleep.  So go ahead do it.  GOOD LUCK WITH THIS 
you and your family are in my prayers.  GOD
  will take care of his angels.
Sandy
lnorman88@...

mdkempes@... wrote:
Li,

I am trying very hard to figure out how all of this came about for you and
your daughter.  You said she had headaches and trouble seeing and that she had
an MRI which diagnosed her with Moya Moya.  Has Dr. Scott seen the MRI films
from the MRI?  Was it a Neurologist or Neuro-Radiologist who diagnosed the Moya
Moya?

I am not a doctor and cannot tell you what to do, but I can tell you how I
feel. When my daughter was diagnosed with Moya Moya, one of the top doctors in
the hospital told me, "She has not had a stroke yet, we should just watch and
wait".  In otherwords, just keep waiting until she does have a stroke, and then
we'll think it's serious enough to do something about.

There is no way to know how long it might have taken for my daughter to
suffer a stroke, ....but I know what the results of a stroke can be, and you can
learn alot more from parents whose children suffered strokes before they even
found out about the Moya Moya and had the opportunity to fix it.  Many children
are still trying to get their lives back to normal because they did have
strokes and suffer brain damage before having the surgery.  After having the
surgery, they have had no more strokes.   Strokes are serious and cause
permanant
damage to the brain.  People can lose the ability to walk, talk, use te
bathroom, think, read, and all kinds of very serious injury to the brain.

For myself, our family, I felt like we were blessed to know ahead of time and
have the opportunity to fix it before my daughter had a stroke.  No one wants
their child to have brain surgery, but I promise you and every other parent
on the Moya Moya website would tell you, that having Dr. Scott fix it as soon
as possible is the only thing that makes sense.  If you wait, the risk of a
stroke increases with each day.
You do not want that to happen to her.  You don't want her to have surgery,
but the alternative of not having it is worse.

Your pediatrician knows you are scared and I am sure he was trying to calm
you down.  The best person to talk to is Dr. Scott.  Dr. Scott has seen many
many many children with Moya Moya and he knows how serious the situation can
get.
Also, if he saw your daughters MRI, he knows how important it is to have the
surgery or I promise you he would not do it.  When he first saw my daughters
MRI, he said he did not think the surgery was necessary right away but that we
should monitor it.  Later, after the radiologists at his hospital reviewed
the MRI scan and met with him to review it, it was decided that there was not
enough blood flow and we should go ahead and do surgery.  Dr. Scott initially
put it off because he did not think it was necessary.  If it was not necessary
for your daughter, he would tell you that.

Moya Moya is not a tumor.  It is not like removing a growth from her brain.
It is very simple.  They will make an incision on her head in front of and
above her ear, they will make a small opening in the bone, he will take an
artery
that is right there in her scalp and separate it from the other tissue on her
scalp.  He will use a special microscope and take the artery through the hole
to the surface of the brain.  He will very carefully open up the outer
covering of the brain (just a thin covering called the dura).  He will use tiny
little stitches to attach the artery to the surface of the brain, barely even
touching the brain, then close everything back up.

Please remember, your friends are not doctors and they do not know what Moya
Moya is.  Moya Moya will continue to develop and cause arteries that carry
blood to the brain, to close.  If you don't create the new blood flow pattern by
attaching the new artery, then eventually, maybe a month, maybe 6 months,
maybe a year or even 2 years, the blood flow will reduce to the point that your
daughter has a stroke.  I know you don't want this to happen.

I did not want to wait because it was a gamble I was not willing to take.  I
cannot predict the future and I would have no way of knowing how much time my
daughter had before she would suffer a stroke.  I could not gamble with her
health.  The better of the two options was to fix it so we never had to worry
about it again.  Now I can
relax because I don't need to worry any more.  I can watch her run and play
and laugh and know that she is safe.

Li, I really don't want to scare you....but I must say that I get scared when
you say that you are thinking about not doing it or that your friends or
family are suggesting that you not do it.  Everyone knows that you are scared
and
they are worried about you also and I am afraid that they are saying the wrong
thing, to try to make you feel better.  They need to understand Moya Moya
before they tell you to not do the surgery and if they do understand it, I know
they will tell you the same as I am telling you....fix it now to protect her
future!

I am sorry if I scared you more by saying this....I would suggest that you go
to the "ParentingChildrenwithMoyaMoya" website and read more of the stories.
These parents told me in August...."Get it done and get it done NOW!!!"  I
took them at their word and I think you should too.  Dr. Scott won't let you (or
him) do anything that is not necessary to keep her safe.

I know Michelle will help you since her son had surgery on both sides.  Read
more of the webgroup messages and I think it will help you understand that
there really are no options.

Take Care, I am praying for you all.

Julia


[Non-text portions of this message have been removed]


Yahoo! Groups SponsorADVERTISEMENT

To unsubscribe from this group, send an email to:
parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com



Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


---------------------------------
Do you Yahoo!?
Free Pop-Up Blocker - Get it now

[Non-text portions of this message have been removed]

If you are looking to slash all your expenses by 75% then you found
the right place! This is the television show began. The company
whose website is at: http://www.wrldofproducts.com was very
interesting so I decided to check it out. I am very skeptical
by nature so the first thing I did was check out the company. I
contacted the Better Business Bureau and found that the company has
had no complaints lodged against them, I also contacted Paypal who
has verified this company. They told me that they verified the
company's licenses, bank accounts and other paperwork indicating to
them that the company is legitimate. Then I started asking co-workers
and friends about this program and to my surprise 4 out of the 10
people that I spoke with were already using this program. They told
me how pleased they were with it and how much money they had saved
and are currently saving. So I decided to sign up for this program
on 11/6/03. On 11/10/03 I received my complete membership package and
the fun began. Using their program and the free lifetime membership
that it includes I went to the supermarket ready to make a killing.
The cashier rang up my grocery bill and it came out to $239.87 then I
presented her with the coupons I received from this program and I
saved $213.38 - my final bill was only $26.49! The cashier wasn't the
only one shocked. This was the most valuable TV show I ever watched!

Melissa Moran

Hi Everyone! My name is Michelle Fredieu and I am from Louisiana. My
daughter Cally was diagnosed with moya-moya in late 2000. She was
perfectly healthy until she was 4 years old. At that time she
started having eposides of headaches, speech problems, partial
paralysis, etc. We were sent to a neurologist and a number of tests
were done. Nothing showed up at that time and she was diagnosed with
complicated migraines. I thought that could be true since I suffer
from migraines myself. She was put on Tegretol and Inderal (a blood
thinner). She was basically fine again until she was 10. At that
time she started having numbness in her hands. She was sent back for
more tests, including an arteriogram. That test showed that she had
moya-moya. We were devastated. Her neurologist didn't know alot
about the disease but referred us to a doctor (Robert Dauser) at
Texas Children's Hospital in Houston, Texas. Both sides were
completely blocked and she had her surgeries in January and February
2001. She went back for her check-up one year later and Dr. Dauser
said that she was doing great! She hasn't had any more problems and
we thank God every day that we got to it in time.
Sincerely, Michelle

Michelle,

Thanks for sharing your story.  I know from reading a document that Dr. Scott
wrote, he has said that Moya Moya progresses.  It may progress slowly and it
may progress rapidly, each patient is different.  It sounds like the
medication that your daughter was put on at age 4 still helped but did not cure
the
problem.

I hope your daughter was not left with any permanant problems.  There are
some wonderful parents who communicate on this website and I think it's a great
support group for all of us, those newly diagnosed and those of us who have
been there and back.  It's a strange and terrible disease but thank goodness
there are treatments that work.

Take care,

Julia



[Non-text portions of this message have been removed]

By the way, Michelle, Where is Louisiana are you from?  My son and his family
are at Ft. Polk outside of Leesville Louisiana.


[Non-text portions of this message have been removed]

--- In parentingchildrenwithmoyamoya@yahoogroups.com, mdkempes@a...
wrote:
> By the way, Michelle, Where is Louisiana are you from?  My son and
his family
> are at Ft. Polk outside of Leesville Louisiana.
> We are from Campti which is right outside of Natchitoches.
>
> [Non-text portions of this message have been removed]

--- In parentingchildrenwithmoyamoya@yahoogroups.com, mdkempes@a...
wrote:
> Michelle,
>
> Thanks for sharing your story.  I know from reading a document
that Dr. Scott
> wrote, he has said that Moya Moya progresses.  It may progress
slowly and it
> may progress rapidly, each patient is different.  It sounds like
the
> medication that your daughter was put on at age 4 still helped but
did not cure the
> problem.
>
> I hope your daughter was not left with any permanant problems.
There are
> some wonderful parents who communicate on this website and I think
it's a great
> support group for all of us, those newly diagnosed and those of us
who have
> been there and back.  It's a strange and terrible disease but
thank goodness
> there are treatments that work.
>
> Take care,
>
> Julia
> Thank you Julia for your kind words. It is a terrible disease but
we are so thankful that we caught Cally's in time. Do you have a
child that suffers from moya-moya? Sincerely, Michelle
>
>
> [Non-text portions of this message have been removed]

I don't have a map in front of me but from what I remember, that is not too
awful far away...and hour maybe?


[Non-text portions of this message have been removed]

My daughter Allison is 8 and she was diagnosed after a routine MRI this past
summer, with Moya Moya.  She has Neurofibromatosis also which creates a
slightly increased risk of Moya Moya.  We had never heard of it, nor had we ever
heard of any type of arterial issues with Neurofibromatosis.  The MRI's are done
routinely to rule out tumors which are associated with NF.  We did not expect
anything to be found on the scan, and were especially shocked to hear of the
Moya Moya.

Allison had surgery on the right side in Boston in November with Dr. Scott.
She did fantastic and continues to.  You would never know she had ever been
through anything.  We consider ourselves very blessed to have found out before
serious effects occurred.  It's a very strange disorder.

Thankfully she is doing well and life has pretty much returned to normal.

Julia




[Non-text portions of this message have been removed]

If you are speaking of Houston from Campti, It is approximately 4 hours awy.

mdkempes@... wrote:I don't have a map in front of me but from what I
remember, that is not too
awful far away...and hour maybe?


[Non-text portions of this message have been removed]


Yahoo! Groups SponsorADVERTISEMENT

To unsubscribe from this group, send an email to:
parentingchildrenwithmoyamoya-unsubscribe@yahoogroups.com



Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



---------------------------------
Do you Yahoo!?
Free Pop-Up Blocker - Get it now

[Non-text portions of this message have been removed]

No, actually I was speaking of how far you live from Ft. Polk.

--- In parentingchildrenwithmoyamoya@yahoogroups.com, mdkempes@a...
wrote:
> No, actually I was speaking of how far you live from Ft. Polk.
I'm sorry! Yes it is about one hour from where we live. Is this where
you are from or do you know someone that lives there? Thanks,
Michelle.

Hi.  My 5 year old niece was just diagnosed and is scheduled for
surgery in Boston on Jan 12.  My question is regarding the prognosis
of children with this disease.  She was hospitalized at birth for 11
days with an "electrolyte inbalance."  At age 3 she was diagnosed
as "developmentally delayed."  She did not walk or talk until after
age 3.  She is still extremely delayed.  Dr. Scott reviewed her
records and said she has had several strokes on both sides of her
brain and recommends doing the surgery very quickly.  Will surgery
improve her development?  Will she be able to function at a higher
level?  Is the surgery just to slow the progression or stop it
altogether?  Do these kids go on to lead a normal, long life or will
the strokes ultimately start again?  Anyone with answers please
respond.  My family is despirately seeking answers.  GB

So glad you found this group.You will definatly get answers here.the
prognosis as far as I have seen and heard is great.My daughter's experience is
proof that this surgery is amazing.Kathleen was 4at the time of diagnosis.She
suffered several strokes also. She was very unstable at the time of surgery(had
had a stroke just the day before).In spite  of this she is doing wonderful.The
last stroke she had  left her with no use of her left side and minimal use of
her right.She was like an infant.It has been over a year now and she ahs had no
new strokes!! She is starting to walk again and use her left arm.I see her
get better every day.She is reading and  writing letters.Kathleen was also born
with Down Syndrome.Her progress since the surgery has been great, We didn't
think she would be reading already at just 6 yrs old! Dr. Scott is just an
amazing person and wonderful Dr.He is very caring.He shows tremendous respect
anad
gets tremendous respect.Everyone at Boston Childrens hospital were so helpful
and caring,we have been there 3 times so far.If your sister has any specific
questions ask away.I can e-mail my number if she needs to talk also.It was a
very scary time but let her know that your family is in our prayers.Keep us
posted.....
Mary Grace


[Non-text portions of this message have been removed]

Hi Genie,

I echo what Mary said.  Dr. Scott is amazing and I am sure that things will
improve for your neice.  My daughter just had the surgery in November but was
lucky enough to have it diagnosed before she suffered any strokes.  I am
attaching a link to some information that I found very helpful.  It is my
understanding that with work and time, children's brains are still growing and
therefore can adapt so that differant parts of the brain, begin to handle
functions like walking, talking writing etc, that other parts of the brain would
have initially handled.  The excellent news is she is very young and from what I
have read, this surgery may correct the problem forever.....but regardless, she
will need to be followed by a neurologist.

Here is the link, hope it offers valuable info.

Good Luck,

Julia

http://www.boston-neurosurg.org/publications/faq/moyamoyaRMS.shtml