I am new to this group, but very glad to have found it.  I am the
mother of a 14 year old boy with moyamoya and he underwent surgery in
February, 2001 on both sides and is doing well.  Dr. Jodi Smith was
his surgeon and she trained under Dr. Scott in Boston. She is
wonderful and I would reccommend her to anyone. Dr. Smith is located
at Riley Hospital for Children in Indianapolis, Indiana.  Geoff (my
son) did not suffer a stroke prior to his surgeries and we were very
lucky that he has very few problems from the disease and leads a
pretty normal life.  I just want to let others know about Dr. Smith
and that she is located in the midwest and that she does the same
procedure as Dr. Scott.  If anyone would like more info., please
contact me.


Debbie Kasper

--- In parentingchildrenwithmoyamoya@y..., littleone6567
<no_reply@y...> wrote:
> my daughter is going to have surgery sept 3rd. want to know what i
> have instore for me i am really scared .i dont know what i need to
> bring ..Dr. Scott is doing the surgery. please let me know.i would
> apprecaite it very much... thank you.  Doreen

Doreen..

My name is Debbie and my sone Geoff underwent surgery in February on
both sides.(actually Feb. 2001) I feel for you  and know what you are
going through.  It will be a trying time, but it is the best thing you
can do for your child.  WE wanted to go to Boston, but Dr. Scott was
unavailable at the time our son had his problems and we went to
Indianapolis on the reccommendation of the staff of Dr. Scott's
office.  Dr. Jodi Smith was the surgeon and I couldn't be
happier.Geoff is doing great and has grown a bunch of new vessels.  He
has recovered very well. It was much different than I thought it would
be. I would love to chat.Feel free to email me at
djkmomo3@....

Debbie.

--- In parentingchildrenwithmoyamoya@y..., harmonmandy <no_reply@y...>
wrote:
> Does anyone's children have seisures or learning disabilities after
> surgery?  I noticed on a eeg report from my daughter that the left
> side was considerbly slower than the rest and the report stated that
> they felt it was concurrent with the moya moya.  I have never heard
> this have any of you?  Mandy

My sone had seizures prior to his surgeries, and he also does have a
slight learning difficulty from the decreased blood flow, but overall
he does fine.  His difficulties are related to executive functions
which deal with organizing his thoughts and actions, but his
intelligence is ok, just has to have assistance with getting things
started and following through.
Debbie

--- In parentingchildrenwithmoyamoya@y..., "Rhonda Gasiorowski"
<lovemom@w...> wrote:
> Hi, My name is Rhonda. I have an 8yr old daughter who was diagnosed
in Jan. and has had 1 surgery. I have known something was wrong for 2
years-but had diagnoses of ODD (oppositional defiant disorder), mood
disorder and learning problems. Any of you had any of these symptoms?
I'm trying to get second opinions and find a good Dr. I'll go
anywhere. We have a good surgeon in MN. but am looking for other
information. I feel so alone and can't believe I found you!!
>
>
> [Non-text portions of this message have been removed]

Please see my other messages.  We also have some behavior and learning
struggles, my son is 14 and had two surgeries in Feb. 2001. In
Indianapolis...excellent surgeon and also we were sent to a
Neuropsychologist over there who told us what kind of problems we were
actually dealing with and how to help. I would be glad to give more
info if you need or want it.
debbie

Hello Everyone...
   I am glad to see the group growing...It has been almost a year
since I began this group when my son was first diagnosed with
Moyamoya and I was looking for support and information.  I just
wanted to share that my son is making great strides.  We are down to
no TIA's and mild headaches, which compared to the frequency and
intensity that the headaches you used to be this is wonderful.  He is
scheduled to have a follow up Arteriogram(I believe that is the word)
this month to see his progress.  He only had the procedure done on
the right side and I am hoping that the left has remained the same.

I hope everyone and their families are doing well...

Leigh

Debbie- Yes I would love to hear what your neuro-psychologist said. Since I
wrote last, Alexa (9) had her second surgery on May 14 and 2 days later had a
major stroke that left her with aphasia and rt. hemiparesis. We spent 1 month in
Children's Hosp and 1 month in rehab. We are going day by day with this new
life. The behavior issues have worsened, her impulsivity level is up. She has so
much to say and no way to say it. Meetings, phone calls, therapies (she hates)
and more and more...I am dealing with school issues now, trying to make sure she
gets what she needs. I would LOVE to hear from you. How is your son doing?? 
Rhonda


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

--- In parentingchildrenwithmoyamoya@y..., "Rhonda Gasiorowski"
<lovemom@w...> wrote:
> Debbie- Yes I would love to hear what your neuro-psychologist said.
Since I wrote last, Alexa (9) had her second surgery on May 14 and 2
days later had a major stroke that left her with aphasia and rt.
hemiparesis. We spent 1 month in Children's Hosp and 1 month in rehab.
We are going day by day with this new life. The behavior issues have
worsened, her impulsivity level is up. She has so much to say and no
way to say it. Meetings, phone calls, therapies (she hates) and more
and more...I am dealing with school issues now, trying to make sure
she gets what she needs. I would LOVE to hear from you. How is your
son doing??  Rhonda
>
>
> [Non-text portions of this message have been removed]

Rhonda-

I am so sorry to hear about your continued struggles after the second
surgery.  My heart goes out to you.

My son is doing well, although we still deal with some behavior
issues. He did not suffer a stroke, but has some very small (lacunar)
infarcts in the frontal areas of his brain which hasn't caused major
problems, but some dysfunction in what they call executive functions,
which makes it almost impossible for him to organize his thoughts and
actions. He needs a lot of cues to remember how to start a project and
get through it, but once he is rolling, he does a good job. He has
always been a high maintenance kid even before the diagnosis. Very
intense,and very impulsive.  The neuropsychologist termed this
executive dysfunction and it can be related to a frontal  lobe injury.
  I found it very helpful to get the neuropsych eval done, but it
sounds to me like you have a lot of other issues to deal with right
now.  It may be something you want to look into later.

Please keep in touch. I think it helps to be able to talk to others.
My email is djkmomo3@....

Debbie

--- In parentingchildrenwithmoyamoya@y..., littleone6567
<no_reply@y...> wrote:
> my daughter is going to have surgery sept 3rd. want to know what i
> have instore for me i am really scared .i dont know what i need to
> bring ..Dr. Scott is doing the surgery. please let me know.i would
> apprecaite it very much... thank you.  Doreen

Hi Doreen, My name is Sheila and my son Charlie (18 monthes) had
surgery on July 15,2002.  I asked lots of questions on this website
prior to Charlie's surgery and got lots of good suggestions.  Look
under mikeiz12.  Charlie had a stroke in March and lots of tests
throughout the spring, then surgery on his left side in July.  We
were amazed by his recovery.  He had surgery on a Monday felt better
by Wednesday and we left on Thursday night.  He was in tough shape on
tuesday.  That day was hard, but the care is excellent and I felt
very confident with Dr. Scott.  Our biggest challenge was saying yes
to pain medication it just was sad to see him so loopy.  Charlie only
needed morphine the first twenty four hours then codine and tylenol.
Here is something I didn't know-morphine makes somepeople's face
itch.  It did for Charlie and it made for restless sleeping.  FYI.
Stay on top of the doesage and times, sometimes you do have to remind
the nurses.  After they start feeling better our biggest battle was
boredom.  How old is your daughter?  What about a book on tape to
pass the time sometimes TV just isnt very soothing.  Oh also keep
requesting a private room.  We were able to have one at least one
night and was nice,  it also cut down on moving from room to room-
which we did a lot of. I will be saying prayers for your family.
sheila

Hello to all-
I wanted to know if anyone has any input on getting through some of
this financial stuff.  Yesterday was bill day. It has been almost 18
months since the surgeries and we are still dealing with
financial "fall out" as I call it.  We are still paying off medical
bills and things just seem to get nowhere sometimes.  It gets quite
depressing.

I am very thankful for everything that has been done for my son and
that he is doing so well.  This is my own personal struggle at this
point. I pray that things will get better. Every day. Please keep me
in your prayers.

Debbie

We were lucky our insurance covered the surgery however the extras
gave us a fit.  We found the EASTER SEALS to be the most helpful.
They said they would help with medical bills, and even travel bills
for medical treatment with a drs note saying it was needed.  We
contacted our state easter seals office to get this done.  I was also
refered to the united way- they did not help much though.  I also had
a social worker from the hospital try to help us with unpaid
expenses.  If you ever need to fly for a surgery angel flight works
weel- we did not contact them soon enough to be able to use them but
I have heard great things. What hospital was the surgery at?  If it
was a teaching hospital like boston they typically do better at
lowering the bills.  Hope this helps mandy

Hello guys,
   Has anyone come to any of the chats.  I was wondering because if so
I would sign on at that time and catch you all.  I would love to chat
with you.  If the Friday chats dont work for your schedules let me
know and I can schedule a different date and time.  Suggestions are
greatly appreciated.

Thanks,
   Leigh

--- leilei543 <no_reply@yahoogroups.com> wrote:
> Hello guys,
>   Has anyone come to any of the chats.  I was
> wondering because if so
> I would sign on at that time and catch you all.  I
> would love to chat
> with you.  If the Friday chats dont work for your
> schedules let me
> know and I can schedule a different date and time.
> Suggestions are
> greatly appreciated.
>
> Thanks,
>   Leigh
>
> Leigh, I didn't realize the chats were every Friday.
  Could you please refresh my memory as to time and how
to join in the chat.

Thanks, Denyse


__________________________________________________
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I didn't realize chats were on Fridays either....please let me know
when and I would love to try and get in on one.  Hope everyone is
doing well.  Katie is due for her three year MRI/MRA next month.
Erik had one this summer and everything looked great.  We are in full
swing with school, soccer, swimming, Brownies and Cub Scouts so we
are busy which makes the time fly.  Hope to chat soon.
Heather

Just a quick note...things are status quo here....for once since the
surgeries two years ago.  I think the medical bills will be under
control finally within the month. Whew!!!!

Geoff is doing much better in school this year, passing all classes
with b's except for history....seems to be a recurring theme. Failing
history.  He has his 2 year follow-up MRI/MRA and angiogram in
February. Last year things were great.

Thanks for everyone's support. I keep trying to make it to the chat.
I'm sure there are so many more things to talk about.

I am still watching my other two children like a hawk. Does anyone
one know how often more than one child in a family are affected?

Deb

--- djkrn2000 <no_reply@yahoogroups.com> wrote:
> Just a quick note...things are status quo
> here....for once since the
> surgeries two years ago.  I think the medical bills
> will be under
> control finally within the month. Whew!!!!
>
> Geoff is doing much better in school this year,
> passing all classes
> with b's except for history....seems to be a
> recurring theme. Failing
> history.  He has his 2 year follow-up MRI/MRA and
> angiogram in
> February. Last year things were great.
>


> Thanks for everyone's support. I keep trying to make
> it to the chat.
> I'm sure there are so many more things to talk
> about.
>
> I am still watching my other two children like a
> hawk. Does anyone
> one know how often more than one child in a family
> are affected?
>
> Deb
>
> Deb, I'm happy to see that Geoff is doing so well.
My daughter has made steady improvement each school
year.  I'm hoping that by high school she'll have
caught up.  Her main problem is with reading.  Her
eyes don't naturally follow the words so it's very
challenging for her.  She really needs to use a
straight edge or her finger, but she doesn't like to
do that.  She also has word retrieval problems that
the school speech therapist is working on with her.

Sometimes siblings also have moyamoya, but it's rare.
When I get really paranoid I worry that I have it!!!
I don't worry so much about my older daughter, because
she has never had any of the symptons my younger
daughter had/has.

Denyse


__________________________________________________
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Deb -

I am not sure if there is a statistic on how often Moyamoya is found
in siblings.  Unfortunately in our family we have two children with
Moyamoya and one without.  I too still watch my older daughter like a
hawk and we even had her get an MRI/MRA after our son was diagnosed,
just to rule it out.  Sometimes I think I would feel better if she
received them yearly like her siblings.  Just for my own piece of
mind.  I do know that when our son was diagnosed after his younger
sister, Dr. Scott said it is extremely rare and he has only a few
families like us.

On a happy note, we celebrated Erik's two years since surgery with a
cake that he picked out yesterday.  It is our yearly tradition with
both kids to have cake on that anniversary. Erik gets two a year, he
had each side done seperately about 6 months apart. We stop to
realize how lucky we are and thankful to all be together and have
everyone doing so well, and to be thankful for our wonderful doctor,
Dr. Scott, who Erik and Katie like to call the Greatest Doctor in the
World.

Hope everyone is doing well.  Would love to chat sometime,
unfortunately this Friday I signed up for a prayer vigil at church at
9:30.  Maybe next week.

Heather

I was wondering how each  of you found out your child had moya moya-
just interested in the stories. Also have any of you had a child
later have a fall that caused a subdural hematoma (bleeding on the
brain)?  Just curious.

We are 2 years since our first surgery and  1 1/2 since our second.
Thanks  Mandy

Hi
Chey had her first stroke that we know of at age 2 1/2 her second a  months
later.  We discovered it after a MRA on January 20th 1999.  She went in for
the arterialgram. Unbeknownst to us her kidneys were also involved and the
dye they used sped up the failure of her left kidney. She is in danger of
losing her other and we are going in for more testing in the next couple
weeks.
Anyway, she had her first surgery in late march of that year(1999).  Before
they could do the surgery they had to remove the dead kidney and get her
blood pressure stable.. during the surgery she suffered her third stroke.
Looking back we believe she has had strokes earlier than what we initially
thought.


As for as her falling, THAT is my BIG fear.  I worry all the time.

Bye
Michelle


******************************************************************************

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

Long story....Katie our youngest suffered a stroke at 2 1/2 years, at
that time she was diagnosed by a Pediatric Neurologist following an
MRI/MRI.  About 4 months after she had surgery our son Erik had a
TIA.  We realized right away what we thought it was and it was
confirmed with a MRI/MRA also.  If you have any other questions let
me know.   Heather

--- In parentingchildrenwithmoyamoya@y..., harmonmandy
<no_reply@y...> wrote:
> I was wondering how each  of you found out your child had moya moya-
> just interested in the stories. Also have any of you had a child
> later have a fall that caused a subdural hematoma (bleeding on the
> brain)?  Just curious.
>
> We are 2 years since our first surgery and  1 1/2 since our second.
> Thanks  Mandy

--->
> Hi- I was asking about the fall because my daughter whom I
mentioned had her first surgery 11/99 and her second 9/00 had a fall
1/02.  In the fall she suffered a subdural hemorage.  She was in the
hospital longer for that than the surgery.  I must say she does fall
and is notmally fine.  She was with a grandmother walking her saint
bernard when anoher dog came up after their dog, she got caught
between and knocked over onto the pavement.  It was hard enough that
her glasses were found at least 50 yards or more away.  Anyway she
seems to have more problems since the fall with anxiety, memory,
ect.  She is also one of a few to have williams syndrome as well so I
am not sure if that also made it worse.  It just now seems as if we
are going well.  She is on a lot of medications from the fall for
anxiety and headaches.  She is now seeing a  psychiatrist to help
since the levels of meds are high.  Hopefully this will work.
I was just curious if any one else had ever gone through that.

Like I say falls in general did not hurt her, this was just a bad one
so dont let  this make you over protective!!!
Mandy

Just wondering what everyone was told about anesthesia?  If anything special
should be done will they have tests/surgery.  Chey hasn't Had to have it done
for 2 years so I want to refresh my memory.  She is going in next week.
Iam kinda new so I will give a brief update.
She has a lot of problems.  She has renal(kidney) involvement and has already
lost one kidney.  The other artery is bad. So they are doing the arterialgram
to see how bad it is and what the next step should be. She has already had
surgery on it once.
Things are not looking good.
Thanks in advance
Michelle
******************************************************************************

*******

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Roosevelt


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

--- pmteet@... wrote:
>
>
> Just wondering what everyone was told about
> anesthesia?  If anything special
> should be done will they have tests/surgery.  Chey
> hasn't Had to have it done
> for 2 years so I want to refresh my memory.  She is
> going in next week.
> Iam kinda new so I will give a brief update.
> She has a lot of problems.  She has renal(kidney)
> involvement and has already
> lost one kidney.  The other artery is bad. So they
> are doing the arterialgram
> to see how bad it is and what the next step should
> be. She has already had
> surgery on it once.
> Things are not looking good.
> Thanks in advance
> Michelle
>
******************************************************************************
>
> *******
>
> No one can make you feel inferior with out your
> permission--- Eleanor
> Roosevelt
>
>
> Check out my auction at...
>  <A
>
HREF="http://www.stores.ebay.com/justcheyamandas">Just
> Chey Amanda'seBay Store</A>
>
>
> [Non-text portions of this message have been
> removed]
>
> Michelle, I'm sorry that Chey is not doing well.
One of my biggest fears is that Maddie will have
involvement in other arteries.

Is she on blood pressure medicine?  I was told that if
other arteries became involved Maddie would have to
take blood pressure medicine.

As far as anesthesia goes, I was also told that
anesthesia for moyamoya patients is vastly different
than for those without.  The anesthesiologists at
Boston Children's Hospital developed a protocol that
many other hospitals use, as well.  I don't know what
hospital you use, but you might want to check with
them to see how they will adminster the anesthesia.

I hope everything goes well and that they will
discover a way to help your daughter.

Denyse


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--- harmonmandy <no_reply@yahoogroups.com> wrote:
> I was wondering how each  of you found out your
> child had moya moya-
> just interested in the stories. Also have any of you
> had a child
> later have a fall that caused a subdural hematoma
> (bleeding on the
> brain)?  Just curious.
>
> We are 2 years since our first surgery and  1 1/2
> since our second.
> Thanks  Mandy
>
>
My daughter started having TIAs.  We didn't know what
they were at the time.  Her pediatrician ordered an
EEG and it came back abnormal, but they didn't know
why.  We went to see a neurologist.  Any time Maddie
hyperventilated she would have a TIA so the
neurologist had her breath deeply and in about 60
seconds she couldn't walk.  He ordered an MRI but it
didn't show any thing.  Then we went to see two
neurologists at Johns Hopkins.  They diagnosed Maddie
with a migraine varient.  Wrong diagnosis, but they
put her on an aspirin a day, and I think that's why
she didn't have a major stroke -- although she has had
several smaller strokes on both sides of her brain.

Things were getting worse so we went to yet another
neurologist at Yale and she diagnosed my daughter with
a seizure disorder.  She was having seizures at this
point.  She ordered an MRI/MRA and that's when we
found out about the moyamoya.  It took 9 months of
looking for an answer, with Maddie getting
progressively worse.

We went to Boston Children's for surgery in February
1999.

Maddie fell off the "big toy" at school and got a
large goose egg on her head, but it went away just
like any kid's would.  I did take her to the doctor
just in case.  I don't really live in fear of her
falling anymore, but when I watch her sleep and she
twitches or looks funny I worry that she's going to
have a seizure or another stroke.  I don't know how
not to worry, but I don't let it get in the way of her
leading a normal life.

Denyse

__________________________________________________
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Thanks,
I am going to write to Dr. Scott today. We did not have surgery there but he
was VERY helpful.
To answer your question YES Chey is on meds. However it gets a little
confusing.  She also has another genetic disease, that in rare cases causes
renal problems. My son also has thedisorder but NOT MOYA MOYA. He has renal
involvement also.  SO they are leaning toward it NOT being the moya moya. I
think it is as her abdominal Aorta is also narrow.  But it doesn't really
matter why it is the way it is as long as they can save it.

Thanks again.  It is nice to have others to speak too. I am a stay at home
mom and do not really have any friends where I live

Thanks
Michelle


******************************************************************************

*******

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Roosevelt


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

--- What other genetic disorder does your daughter have?  My daughter
also has another genetic disorder that is rare with moya moya.  Dr.
Scott answered all my questions with the anest. when we were going to
another hospital.  He told my what to ask and what to look for. Hope
he helps you. Mandy








In parentingchildrenwithmoyamoya@y..., pmteet@c... wrote:
> Thanks,
> I am going to write to Dr. Scott today. We did not have surgery
there but he
> was VERY helpful.
> To answer your question YES Chey is on meds. However it gets a
little
> confusing.  She also has another genetic disease, that in rare
cases causes
> renal problems. My son also has thedisorder but NOT MOYA MOYA. He
has renal
> involvement also.  SO they are leaning toward it NOT being the moya
moya. I
> think it is as her abdominal Aorta is also narrow.  But it doesn't
really
> matter why it is the way it is as long as they can save it.
>
> Thanks again.  It is nice to have others to speak too. I am a stay
at home
> mom and do not really have any friends where I live
>
> Thanks
> Michelle
>
>
>
**********************************************************************
********
>
> *******
>
> No one can make you feel inferior with out your permission---
Eleanor
> Roosevelt
>
>
> Check out my auction at...
>  <A HREF="http://www.stores.ebay.com/justcheyamandas">Just Chey
Amanda'seBay Store</A>
>
>
> [Non-text portions of this message have been removed]

She has ... are you ready.....Neurofibromatosis. NF1 for short. As do I and
my son. My oldest does not.

What other disorder does your child have?

Michelle


******************************************************************************

*******

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

--- In parentingchildrenwithmoyamoya@y..., harmonmandy
<no_reply@y...> wrote:
> I was wondering how each  of you found out your child had moya moya-
> just interested in the stories. Also have any of you had a child
> later have a fall that caused a subdural hematoma (bleeding on the
> brain)?  Just curious.
>
> We are 2 years since our first surgery and  1 1/2 since our second.
> Thanks  Mandy

Mandy-

We found out about Geoff's moyamoya on January 21, 2000. He bagan
having TIA"s in September or October of '99, but at first it was just
assumed to be related to Mono which he also had at the time, as the
TIA's continued to worsen in severity, and frequency, we continued to
search for an answer, and as a nurse, I was getting more worried all
the time.  His symptoms were'nt clear cut TIA's, at first.  He
started by passing out, the numbness, weakness and tingling came
later. After ct scans, eegs, x rays, etc, finally on January 21, and
MRi/MrA diagnosed it and we were then on a search for a surgeon we
were comfortable with.  Dr. Scott was not available for quite a
while, and we were referred to Dr. Jodi Smith in Indianapolis,
Indiana,and she had us in her office by January 30.  Once the workup
was done, it was clear that he needed surgery and he needed it soon,
so th first surgery was on Feb. 5, and the 2nd on the 9th. Both sides
were equally bad and both severe and she didn't feel comfortable
waiting the usual time between surgeries. He came through both
without a problem and did not suffer a stroke.  We count our
blessings everyday. And thank God for Dr. Smith(who was trained by
Dr. Scott, by the way.) We will celebrate 2 years in February.

Deb

--- In parentingchildrenwithmoyamoya@y..., pmteet@c... wrote:
>
>
> Just wondering what everyone was told about anesthesia?  If
anything special
> should be done will they have tests/surgery.  Chey hasn't Had to
have it done
> for 2 years so I want to refresh my memory.  She is going in next
week.
> Iam kinda new so I will give a brief update.
> She has a lot of problems.  She has renal(kidney) involvement and
has already
> lost one kidney.  The other artery is bad. So they are doing the
arterialgram
> to see how bad it is and what the next step should be. She has
already had
> surgery on it once.
> Things are not looking good.
> Thanks in advance
> Michelle
>Michelle-

Our 14 year old son had 2 surgeries, two years ago and we too were
told if they ever have any kind of anesthesia, there was a specific
protocol to be followed, and it should be discussed prior to any
surgery.  Our surgeon was trained under Dr. Scott and is Dr. Jodi
Smith in Indianapolis, Indiana.  She too is wonderful. I am concerned
about my son too because his blood pressure has a tendency to run
high, although not high enough yet to check into anything else, I am
concerned about the renal artery involvement too. otherwise, he is
doing great.  Good Luck.

Deb
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--- In parentingchildrenwithmoyamoya@y..., <dareinhart@y...> wrote:
> --- djkrn2000 <no_reply@y...> wrote:
> > Just a quick note...things are status quo
> > here....for once since the
> > surgeries two years ago.  I think the medical bills
> > will be under
> > control finally within the month. Whew!!!!
> >
> > Geoff is doing much better in school this year,
> > passing all classes
> > with b's except for history....seems to be a
> > recurring theme. Failing
> > history.  He has his 2 year follow-up MRI/MRA and
> > angiogram in
> > February. Last year things were great.
> >
>
>
> > Thanks for everyone's support. I keep trying to make
> > it to the chat.
> > I'm sure there are so many more things to talk
> > about.
> >
> > I am still watching my other two children like a
> > hawk. Does anyone
> > one know how often more than one child in a family
> > are affected?
> >
> > Deb
> >
> > Deb, I'm happy to see that Geoff is doing so well.
> My daughter has made steady improvement each school
> year.  I'm hoping that by high school she'll have
> caught up.  Her main problem is with reading.  Her
> eyes don't naturally follow the words so it's very
> challenging for her.  She really needs to use a
> straight edge or her finger, but she doesn't like to
> do that.  She also has word retrieval problems that
> the school speech therapist is working on with her.
>
> Sometimes siblings also have moyamoya, but it's rare.
> When I get really paranoid I worry that I have it!!!
> I don't worry so much about my older daughter, because
> she has never had any of the symptons my younger
> daughter had/has.
>
> Denyse
>
> Denyse-

Thanks for the answers.  I too even become paranoid at times about
myself.  I have migraines and it makes me worry.  I watch my kids
always.  And Geoff insists on doing things normal kids do,(with a
helmet when warranted,) so that makes me nervous, but as he told
me, " If i made through all of that surgery just to be miserable, it
wouldn't have been worth it to me."  He has a point, so I grin and
bear it, and pray alot.  :)

Deb
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Geoff had a TIA/stroke last week that affected only his right hand,
but it has been two years since his surgeries and a year since his
last TIA.  He still has residual weakness and numbness in his Right
hand and is going to start therapy this week.  They don't understand
why it happened or why it didn't fully resolve as he doesn't have any
signs on the MRI/MRA of anything permanent. She hopes it will
continue to resolve, but it is still significantly weaker than the
left and it is completely numb...

Has anyone else had something like this happen after surgery?

Thanks,
Debbie