My daughter is 16 years old.  She had surgery for moya moya on Jan.
5th.  She was fine up to 3 days after surgery but then had an
infarct in the left parietal lobe.  Now she has guestmanns syndrome
and has difficulty distinguishing from right and left, writing,
doing simple math.
She is a straight A student.  The doctor says she will have 80 to
100% recovery.  but I am still worried.
Has anyone else been in this situation?

I'm afraid I haven't heard of this but will pray for a full recovery for
you.
Nancy Mc

>From: "hmkim2000" <hmkim2000@...>
>Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
>To: parentingchildrenwithmoyamoya@yahoogroups.com
>Subject: [Parenting Children with Moyamoya] 16 year old
>Date: Thu, 20 Jan 2005 11:02:57 -0000
>
>
>My daughter is 16 years old.  She had surgery for moya moya on Jan.
>5th.  She was fine up to 3 days after surgery but then had an
>infarct in the left parietal lobe.  Now she has guestmanns syndrome
>and has difficulty distinguishing from right and left, writing,
>doing simple math.
>She is a straight A student.  The doctor says she will have 80 to
>100% recovery.  but I am still worried.
>Has anyone else been in this situation?
>
>
>
>

Sorry, I have not heard anything about this.  We will keep you all in our
prayers!
Rebecca Phillips and Family

hmkim2000 <hmkim2000@...> wrote:

My daughter is 16 years old.  She had surgery for moya moya on Jan.
5th.  She was fine up to 3 days after surgery but then had an
infarct in the left parietal lobe.  Now she has guestmanns syndrome
and has difficulty distinguishing from right and left, writing,
doing simple math.
She is a straight A student.  The doctor says she will have 80 to
100% recovery.  but I am still worried.
Has anyone else been in this situation?






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

my daughter had some of these same issues- however it was never called
guestmanns



>From: rebecca phillips <raphillips00@...>
>Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
>To: parentingchildrenwithmoyamoya@yahoogroups.com
>Subject: Re: [Parenting Children with Moyamoya] 16 year old
>Date: Thu, 20 Jan 2005 11:48:11 -0800 (PST)
>
>Sorry, I have not heard anything about this.  We will keep you all in our
>prayers!
>Rebecca Phillips and Family
>
>hmkim2000 <hmkim2000@...> wrote:
>
>My daughter is 16 years old.  She had surgery for moya moya on Jan.
>5th.  She was fine up to 3 days after surgery but then had an
>infarct in the left parietal lobe.  Now she has guestmanns syndrome
>and has difficulty distinguishing from right and left, writing,
>doing simple math.
>She is a straight A student.  The doctor says she will have 80 to
>100% recovery.  but I am still worried.
>Has anyone else been in this situation?
>
>
>
>
>
>
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>[Non-text portions of this message have been removed]
>

We are considering a Moyamoya baby. I know not all cases are the same,
we have 2 other SN kids and I know each child and their disease is
different. But what should/could I expect, look for, treatment needed
etc. I am gathering facts!! I find the medical website over my head and
glad I found you!!

Thanks so much!

Ann Grabeman

Ann,
Check out www.moyamoya.com it has a lot of info and a lot of people with
experience with MM. Surgery is the only thing I know of to help with MM. Also it
depends if the patient has had a stroke or not just what other treatment is
needed. My son had a stroke 2 years ago and is still in therapy.
Rena

Ann <mome2abc@...> wrote:
We are considering a Moyamoya baby. I know not all cases are the same,
we have 2 other SN kids and I know each child and their disease is
different. But what should/could I expect, look for, treatment needed
etc. I am gathering facts!! I find the medical website over my head and
glad I found you!!

Thanks so much!

Ann Grabeman




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

This is my first post.  Our daughter Juliana has been monitored for
Neurofibromatosis since she was 8 weeks old.  Last year she was
officially diagnosed with the condition, as part of her observation
she needs to get MRI's of the brain.  Last year it was noticed that
her left side internal carotid was missing.  This year we were told
that she has Moyamoya syndrome and is at risk of having a stroke at
anytime.  We currently are taking her to Children's Hospital of
Philadelphia.  We think that he Neurologist is wonderful (DR. Rebecca
Icord), the Neurosurgeon there wants to operate on her but we are
apprehensive since we are unsure of his knowledge of Moyamoya.  We
have been in contact with Dr. Scott in Boston and he has called us on
several occasions we think he is a wonderful human being.  He is going
out of town next week but after that he wants to do surgery on our
daughter.  I am not really sure if I am asking a question here but
maybe just looking for a little reassurance.

Kevin M. Cave

Hi Kevin -  My son is a patient of Dr. Scott's.  He has moya moya and was
operated on by Dr. Scott the first time just about 2 years ago.  I can't say
enough good things about him.  He is kind, caring -- and experienced.  I think
your daughter would be in wonderful, safe and knowledgeable  hands.

If I can answer any questions, please don't hesitate.

Best of luck,

Ginny

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

Kevin,
It sounds like you are on the right track. You might also want to check out
www.moyamoya.com it is a great support system and a great source of information.
I will keep you family in my prayers.

kevin_c86 <kevin_c86@...> wrote:
This is my first post.  Our daughter Juliana has been monitored for
Neurofibromatosis since she was 8 weeks old.  Last year she was
officially diagnosed with the condition, as part of her observation
she needs to get MRI's of the brain.  Last year it was noticed that
her left side internal carotid was missing.  This year we were told
that she has Moyamoya syndrome and is at risk of having a stroke at
anytime.  We currently are taking her to Children's Hospital of
Philadelphia.  We think that he Neurologist is wonderful (DR. Rebecca
Icord), the Neurosurgeon there wants to operate on her but we are
apprehensive since we are unsure of his knowledge of Moyamoya.  We
have been in contact with Dr. Scott in Boston and he has called us on
several occasions we think he is a wonderful human being.  He is going
out of town next week but after that he wants to do surgery on our
daughter.  I am not really sure if I am asking a question here but
maybe just looking for a little reassurance.

Kevin M. Cave




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Dear Kevin,

We are sorry that you had to find our website, but are glad you
did.  I have two children with moyamoya and both had surgery with
Dr. Scott.  He is a wonderful human being.  He was so great with the
kids, they still talk about how great Dr. Scott is and ask when they
are going to go see him again.  Clark and I had complete confidence
in him and he really put us at ease.  He has always been there to
answer any questions we had.

I have heard good things about CHOP but we too went to Dr. Scott
because of his expertise and we could tell from the first phone
conversation what a caring man he was.

If you have any questions please ask away.  It is a difficult time,
our kids had surgery 5 years ago and are doing great.

We will keep you in our thoughts and let us know how Juliana is
doing.

Heather Brigger

Dear Heather,

It surely was good to hear from another family with similar health issues.  We
are all unfortunate to manage this challenging grief and only have hope for a
better future.  I immediately got the very same impression of Dr. Scott and its
reassuring to know its true.

I am so glad to know that your children are doing well.  Can you share with us
there names and history of there condition?  I have so many unanswered questions
that are flooding my thoughts at this time.  Dr. Scott is in CA on medical
business and will not return until Monday.  Did you travel by airplane to
Boston?  How long was your travel time?  I am concerned if Juliana needs medical
attention during our travel as well as every minute until we get there on June
6th is her admission date, surgery June 7th.  Did you stay at a near by hotel or
one of the facilities associated with the hospital?  Is there anything that you
can tell us about what we should bring with us?  Also what we may expect
post-op, on the way home, or even when we are home?

I am sorry if this is overwhelming with all of my concerns and hope that it does
not bring you to remembering any sadness that you and your family went through.

Thank you so very much in advance,

                                                    Mary Cave

chbrigger <no_reply@yahoogroups.com> wrote:
Dear Kevin,

We are sorry that you had to find our website, but are glad you
did.  I have two children with moyamoya and both had surgery with
Dr. Scott.  He is a wonderful human being.  He was so great with the
kids, they still talk about how great Dr. Scott is and ask when they
are going to go see him again.  Clark and I had complete confidence
in him and he really put us at ease.  He has always been there to
answer any questions we had.

I have heard good things about CHOP but we too went to Dr. Scott
because of his expertise and we could tell from the first phone
conversation what a caring man he was.

If you have any questions please ask away.  It is a difficult time,
our kids had surgery 5 years ago and are doing great.

We will keep you in our thoughts and let us know how Juliana is
doing.

Heather Brigger








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

Dear Heather,

It surely was good to hear from another family with similar health issues.  We
are all unfortunate to manage this challenging grief and only have hope for a
better future.  I immediately got the very same impression of Dr. Scott and its
reassuring to know its true.

I am so glad to know that your children are doing well.  Can you share with us
there names and history of there condition?  I have so many unanswered questions
that are flooding my thoughts at this time.  Dr. Scott is in CA on medical
business and will not return until Monday.  Did you travel by airplane to
Boston?  How long was your travel time?  I am concerned if Juliana needs medical
attention during our travel as well as every minute until we get there on June
6th is her admission date, surgery June 7th.  Did you stay at a near by hotel or
one of the facilities associated with the hospital?  Is there anything that you
can tell us about what we should bring with us?  Also what we may expect
post-op, on the way home, or even when we are home?

I am sorry if this is overwhelming with all of my concerns and hope that it does
not bring you to remembering any sadness that you and your family went through.

Thank you so very much in advance,

                                                    Mary Cave

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

Juliana's surgery date is set.  We will be going to Boston on June 6
and her surgery will be on the 7th.  Thank you all for your help and
support.

Kevin, Mary and Juliana.

Hope all goes well

Jane and Family.



kevin_c86 <kevin_c86@...> wrote: Juliana's surgery date is set.  We will
be going to Boston on June 6
and her surgery will be on the 7th.  Thank you all for your help and
support.

Kevin, Mary and Juliana.






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

Will & I are walking again for the annual Boston Children's Hospital 
Fundraiser.  Last year, our team raised over $5500 and we hope to exceed  that
amount in 2005.

Many of us have experienced first-hand the amazing discoveries at  Children's
Hospital that change children's lives.

We walk to thank Dr. Scott and his staff.


  Please make a gift. It's quick and easy to do, right from our Web page.
http://giving.childrenshospital.org/pfp/walk05/will

(if the link doesn't work, you can copy/paste into your browser)

Thank  you!

  Ginny & Will


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

My name is Tom Busam and my wife and I just had our five year old
daughter diagnosed with moyamoya on May 27,2005.  We live in Northern
Kentucky and she was looked at Children's Hospital of Cincinnati.
Everything I have seen on the internet seem's to have nothing but good
things to say about Dr. Scott in Boston. We are to meet with a
neurosurgeon here in town, but they don't seem to be to familiar with
this disease.  I was hoping somebody could let us know if they have
seen Dr. Scott and their impressions they got. Thank you for your help
in this difficult time.

Tom,
I don't know Dr. Scott, but felt you might also check out www.moyamoya.com. They
have a list of other doctors that have experience with MM, incase you can't make
it to Dr. Scott or Dr. Steinberg. I will keep your family in my prayers.
Rena

tlmej <tlbusam@...> wrote:
My name is Tom Busam and my wife and I just had our five year old
daughter diagnosed with moyamoya on May 27,2005.  We live in Northern
Kentucky and she was looked at Children's Hospital of Cincinnati.
Everything I have seen on the internet seem's to have nothing but good
things to say about Dr. Scott in Boston. We are to meet with a
neurosurgeon here in town, but they don't seem to be to familiar with
this disease.  I was hoping somebody could let us know if they have
seen Dr. Scott and their impressions they got. Thank you for your help
in this difficult time.




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--- tlmej <tlbusam@...> wrote:
Tom, I'm so sorry that you and your daughter have to
go through this.  My daughter also has moyamoya, and
her surgeon is Dr. Scott.   She was diagnosed when she
was six, and is now 12.

Dr. Scott is wonderful.  Aside from being an excellent
surgeon, he is also a kind, compassionate man.  The
other benefit to having Dr. Scott perform the surgery
is that Boston Children's is very experienced in
taking care of moyamoya patients.  Their
anesthesiology department designed the anesthesia
protocol that is used throughout the country.

Dr. Scott is very approachable, you can e-mail him, or
call, and he will call you back.  It is definitely
worth talking with him, and he'll speak to your
doctors there, if they want to speak with him.

If it helps, I can tell you that our daughter is doing
very well.  She is now in seventh grade, and is a
happy outgoing, almost teenager.  Unless we tell
someone, no one would ever know what she's been
through.  She has a few minor learning issues due to
strokes she had prior to surgery, but they are blips
on the radar screen.

I'll keep you in my prayers.

Denyse
> My name is Tom Busam and my wife and I just had our
> five year old
> daughter diagnosed with moyamoya on May 27,2005.  We
> live in Northern
> Kentucky and she was looked at Children's Hospital
> of Cincinnati.
> Everything I have seen on the internet seem's to
> have nothing but good
> things to say about Dr. Scott in Boston. We are to
> meet with a
> neurosurgeon here in town, but they don't seem to be
> to familiar with
> this disease.  I was hoping somebody could let us
> know if they have
> seen Dr. Scott and their impressions they got. Thank
> you for your help
> in this difficult time.
>
>
>


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Dear Kevin and Mary,

Sorry it has talked me so long to get back to you.  I was out of
town for a few days.  I am so glad you are making the trip to
Boston.  Dr. Scott is wonderful and the whole team is very familiar
with Moyamoya, you will feel much more comfortable there than any
where else.

We did not travel by plane, we lived in Maine at the time of our
kids surgeries and so we traveled by car.  Actually Katie was
transported from Maine to Boston by ambulance, but made the trip
home by car.  I know a few people who have flown before and after
surgery with no problems, one from Ireland.  I remember the feeling
of waiting for a time bomb to go off before and after surgery, it is
a very uneasy time and we will keep you and Juliana in our prayers.
We stayed a the Med Inn right next to the hospital for Erik's
surgery of course one of us stayed with Erik.  For Katie she had a
private room and we both stayed with her. They have chairs that will
fold down and can be made into a bed.  Also the night after surgery
their is a chair to sit in in the PICU right next to the bed as well
as a little waiting room with phone right on the floor.  They also
have beds near by that you can check out.  It is kind of like a dorm
room with curtains around the bed.  Clark and I took turns trying to
sleep there, but not much sleep was had.  How old is Julianna?  We
just brought the basics for us and comfortable sweat pants, etc for
the kids.  They were both allowed to bring in their blankies all the
way to the operating room, then they took them from them after they
were asleep.  They do alot to keep the kids as at ease as possible.
The kids still remember going to look at all the fish tanks and also
there is an area with a jukebox that they can pick songs to play.

They have VCR's etc. in the rooms for them to watch movies and there
is a play room on the floor that Erik was playing in the day after
surgery.

I am rambling on, so please ask questions and I will try to answer
them.  One thing to be prepared for is the swelling in their face
for the first couple of days after surgery.  It was a shock but went
away quickly.

A quick history of their health issues.

Katie had her first stroke at age 2 1/2, while waiting for surgery
she had a stroke on the other side.  She still receives PT/OT/ST for
her issues due the the strokes, but has had no further strokes since
surgery and has come a long way and continues to recover.  4 months
after Katie's surgery Erik had a TIA and we immediately had hime get
an MRI.  They found he too had Moyamoya and we were down in Boston
the next week for surgery.  He only had one side down that May and
then the other side down in October of the same year (2000)  The
second side hadn't progressed enough for Dr. Scott to do the surgery.

Erik also suffers from Evans Syndrome (an autoimmune disorder) and
has a compliment deficiency.  Katie has no other health issues.
Erik was diagnosed with Evans about a year after moyamoya.

Like I said earlier both of the kids are doing great since surgery.
Dr. Scott did advise to not let them cry to much for the first six
months after surgery. crying can cause hyperventilation.

Please don't apologize for any questions, I wish I had this group
when my kids were going thru all of this.  If you have any more
questions please ask.  We will keep you all in our thoughts and
prayers, especially on the 7th.
--- In parentingchildrenwithmoyamoya@yahoogroups.com, Kevin Cave
<kevin_c86@y...> wrote:
> Dear Heather,
>
> It surely was good to hear from another family with similar health
issues.  We are all unfortunate to manage this challenging grief and
only have hope for a better future.  I immediately got the very same
impression of Dr. Scott and its reassuring to know its true.
>
> I am so glad to know that your children are doing well.  Can you
share with us there names and history of there condition?  I have so
many unanswered questions that are flooding my thoughts at this
time.  Dr. Scott is in CA on medical business and will not return
until Monday.  Did you travel by airplane to Boston?  How long was
your travel time?  I am concerned if Juliana needs medical attention
during our travel as well as every minute until we get there on June
6th is her admission date, surgery June 7th.  Did you stay at a near
by hotel or one of the facilities associated with the hospital?  Is
there anything that you can tell us about what we should bring with
us?  Also what we may expect post-op, on the way home, or even when
we are home?
>
> I am sorry if this is overwhelming with all of my concerns and
hope that it does not bring you to remembering any sadness that you
and your family went through.
>
> Thank you so very much in advance,
>
>                                                    Mary Cave
>
> chbrigger <no_reply@yahoogroups.com> wrote:
> Dear Kevin,
>
> We are sorry that you had to find our website, but are glad you
> did.  I have two children with moyamoya and both had surgery with
> Dr. Scott.  He is a wonderful human being.  He was so great with
the
> kids, they still talk about how great Dr. Scott is and ask when
they
> are going to go see him again.  Clark and I had complete
confidence
> in him and he really put us at ease.  He has always been there to
> answer any questions we had.
>
> I have heard good things about CHOP but we too went to Dr. Scott
> because of his expertise and we could tell from the first phone
> conversation what a caring man he was.
>
> If you have any questions please ask away.  It is a difficult
time,
> our kids had surgery 5 years ago and are doing great.
>
> We will keep you in our thoughts and let us know how Juliana is
> doing.
>
> Heather Brigger
>
>
>
>
>
>
>
>
> ---------------------------------
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>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/
>
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>
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Service.
>
>
>
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> [Non-text portions of this message have been removed]

Dear Tom,

As you may have read in previous posts we have two children with
moyamoya and their neurosurgeon was Dr. Scott.  He is an wonderful man
and Dr.  Our kids have done very well since surgery and we were very
happy that we decided to go to Boston for the surgeries.  Katie was 2
1/2 for surgery and Erik was 5.  So if you have any further questions
please let us know.  Our thought are with you during this difficult
time.

Heather Brigger
--- In parentingchildrenwithmoyamoya@yahoogroups.com, "tlmej"
<tlbusam@f...> wrote:
> My name is Tom Busam and my wife and I just had our five year old
> daughter diagnosed with moyamoya on May 27,2005.  We live in
Northern
> Kentucky and she was looked at Children's Hospital of Cincinnati.
> Everything I have seen on the internet seem's to have nothing but
good
> things to say about Dr. Scott in Boston. We are to meet with a
> neurosurgeon here in town, but they don't seem to be to familiar
with
> this disease.  I was hoping somebody could let us know if they have
> seen Dr. Scott and their impressions they got. Thank you for your
help
> in this difficult time.

In reply to your message-  Since you are in Ohio, if you want another
option, there is a very very good Doctor in Indiannapolis that trained
under Dr. Scott and does the same type of surgery.  She operated on my
son in 2001(both sides), and he has done extremely well.  We were very
impressed with her and the hospital at Riley's Children's Hospital in
Indianapolis.  We live in Illinois and this was and has been a great
choice for us.  We love Dr. Smith.

djkrn2000



--- In parentingchildrenwithmoyamoya@yahoogroups.com, "tlmej"
<tlbusam@f...> wrote:
> My name is Tom Busam and my wife and I just had our five year old
> daughter diagnosed with moyamoya on May 27,2005.  We live in
Northern
> Kentucky and she was looked at Children's Hospital of Cincinnati.
> Everything I have seen on the internet seem's to have nothing but
good
> things to say about Dr. Scott in Boston. We are to meet with a
> neurosurgeon here in town, but they don't seem to be to familiar
with
> this disease.  I was hoping somebody could let us know if they have
> seen Dr. Scott and their impressions they got. Thank you for your
help
> in this difficult time.

===, Dr. Scott is very approachable, you can e-mail him, or
call, and he will call you back.  It is definitely
worth talking with him, and he'll speak to your
doctors there, if they want to speak with him.===


This is SO true.  6 years ago when my daughter was diagnosis.We emailed him.
  He actually new the neurosurgeon here in st. louis and felt he was MORE
then competent to do the surgery.  We e-mailed him several times and he
always replied even though we were not his patients.  He seems like a very
kind man.



===If it helps, I can tell you that our daughter is doing
very well. ==

Our daughter is doing great too at least were her strokes are concerned.
She has not stroked since surgery in 1999.


Michelle
.

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

--- In parentingchildrenwithmoyamoya@yahoogroups.com, "pmteet@s..."
<pmteet@s...> wrote:
>  Michelle,
Thank you for your response.  Dr. Scott has already answered a few
questions for us.
>
>
> ===, Dr. Scott is very approachable, you can e-mail him, or
> call, and he will call you back.  It is definitely
> worth talking with him, and he'll speak to your
> doctors there, if they want to speak with him.===
>
>
> This is SO true.  6 years ago when my daughter was diagnosis.We
emailed him.
>  He actually new the neurosurgeon here in st. louis and felt he was
MORE
> then competent to do the surgery.  We e-mailed him several times
and he
> always replied even though we were not his patients.  He seems like
a very
> kind man.
>
>
>
> ===If it helps, I can tell you that our daughter is doing
> very well. ==
>
> Our daughter is doing great too at least were her strokes are
concerned.
> She has not stroked since surgery in 1999.
>
>
> Michelle
> .
>
> [Non-text portions of this message have been removed]

Kevin, My daughter had surgery with Dr Scott in Boston in 2000 and 2001.  We
were living in SC at the time. Currently we are in PA.  This past January my
daughter had some issues and we went to CHOP.  Dr. Ichod is a wonderful DR.
One of the smartest I have seen.  She knows Dr. Scott, they have worked
togather on at least one other case.  (We always ask now that he be
conferred with if there are any issues with my daughter)  I love CHOP, all
of our specialist are there, however, if my child needs surgery for MOya
Moya again, and it is in any way finiancially possible I will make the trip
to Boston.  Dr. Scott is the guru of Moya Moya.  I hope this helps.

Mandy

>From: "kevin_c86" <kevin_c86@...>
>Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
>To: parentingchildrenwithmoyamoya@yahoogroups.com
>Subject: [Parenting Children with Moyamoya] Juliana
>Date: Fri, 20 May 2005 23:49:27 -0000
>
>This is my first post.  Our daughter Juliana has been monitored for
>Neurofibromatosis since she was 8 weeks old.  Last year she was
>officially diagnosed with the condition, as part of her observation
>she needs to get MRI's of the brain.  Last year it was noticed that
>her left side internal carotid was missing.  This year we were told
>that she has Moyamoya syndrome and is at risk of having a stroke at
>anytime.  We currently are taking her to Children's Hospital of
>Philadelphia.  We think that he Neurologist is wonderful (DR. Rebecca
>Icord), the Neurosurgeon there wants to operate on her but we are
>apprehensive since we are unsure of his knowledge of Moyamoya.  We
>have been in contact with Dr. Scott in Boston and he has called us on
>several occasions we think he is a wonderful human being.  He is going
>out of town next week but after that he wants to do surgery on our
>daughter.  I am not really sure if I am asking a question here but
>maybe just looking for a little reassurance.
>
>Kevin M. Cave
>
>

It has been 6 months since my19 yr old  son underwent surgery at
Mayo Clinic for moya moya and today he is recovering remarkably; still
has outpatient physical therapy for left hand weakness but otherwise we
are grateful to Dr Piepgras from Mayo Clinic for his outstanding
surgical skills and great bedside manners.
  We hope to encourage other parents and children who are devastated by
this disease not to lose hope and believe that there is a God out there.

Its wonderful to hear of Children getting better, this is a great support group.
My daughter was diagnosed with Moya Moya when she was 1 and 1/2 and most
information i have learnt has been from this site. I hope this site carrys on
helping more and more parents when they have no where else to turn for advice
from people who know as they have too been through the same distressing
situation.

Jane



ymb829 <ymb829@...> wrote: It has been 6 months since my19 yr old  son
underwent surgery at
Mayo Clinic for moya moya and today he is recovering remarkably; still
has outpatient physical therapy for left hand weakness but otherwise we
are grateful to Dr Piepgras from Mayo Clinic for his outstanding
surgical skills and great bedside manners.
We hope to encourage other parents and children who are devastated by
this disease not to lose hope and believe that there is a God out there.






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Juliana had her surgery yesterday with Dr. Scott.  He was very happy
with surgery and said it went even better then he thought.  Juliana is
still in the ICU but is recovering fast and will transfer to another
roo this afternoon.  Thank you all for your support.

You've been invited to visit Juliana Cave's online CarePage.
A personalized Web page, called a CarePage, has been created
for Juliana, so you can easily receive
the latest news, view photos and share messages of support.

To visit the CarePage, please click the link below:

http://www.carepages.com/ServeCarePage?cpn=julianacave

Kevin,
Our daughter Mallory will be seeing Dr. Scott on June 16 for an evaulation. 
Would you mind telling me if Juliana had both sides operated on  at the same
time or under one anesthesia. I hope your daughter does wonderful in her
recovery and best wishes.

Tom Busam
>
> From: "kevin_c86" <kevin_c86@...>
> Date: 2005/06/08 Wed AM 11:36:12 EDT
> To: parentingchildrenwithmoyamoya@yahoogroups.com
> Subject: [Parenting Children with Moyamoya] Juliana
>
> Juliana had her surgery yesterday with Dr. Scott.  He was very happy
> with surgery and said it went even better then he thought.  Juliana is
> still in the ICU but is recovering fast and will transfer to another
> roo this afternoon.  Thank you all for your support.
>
> You've been invited to visit Juliana Cave's online CarePage.
> A personalized Web page, called a CarePage, has been created
> for Juliana, so you can easily receive
> the latest news, view photos and share messages of support.
>
> To visit the CarePage, please click the link below:
>
> http://www.carepages.com/ServeCarePage?cpn=julianacave
>
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>

Dear Tom,

Juliana has a condition called NF 1(neurofibromatosis) which gives her the need
to have brain scans every 6 months. The problem that she has is that her left
internal cardioid artery is not present, she was born this way.  Obviously Dr
Scott would be the person to make the decision about Mallory. I would absolutely
follow his advice.  I can tell you if he is suggesting that they do two separate
surgeries that may make sense.  Prior to this surgery my daughter has been under
anesthesia 4 times before we even new of any risks.  I have done a lot of
research on this before I brought my daughter to Boston.  This type operation is
not like a heart by-pass where the results are immediate, the Brain needs to
learn that there is a new source of blood flow.   Please keep in mind that the
Doctors are obligated to give you the worst possible scenario.  If I can help
you in any other way please do not hesitate to contact me.  We will pray for
Mallory.

Kevin Cave


tlbusam@... wrote:
Kevin,
Our daughter Mallory will be seeing Dr. Scott on June 16 for an evaulation. 
Would you mind telling me if Juliana had both sides operated on  at the same
time or under one anesthesia. I hope your daughter does wonderful in her
recovery and best wishes.

Tom Busam
>
> From: "kevin_c86" <kevin_c86@...>
> Date: 2005/06/08 Wed AM 11:36:12 EDT
> To: parentingchildrenwithmoyamoya@yahoogroups.com
> Subject: [Parenting Children with Moyamoya] Juliana
>
> Juliana had her surgery yesterday with Dr. Scott.  He was very happy
> with surgery and said it went even better then he thought.  Juliana is
> still in the ICU but is recovering fast and will transfer to another
> roo this afternoon.  Thank you all for your support.
>
> You've been invited to visit Juliana Cave's online CarePage.
> A personalized Web page, called a CarePage, has been created
> for Juliana, so you can easily receive
> the latest news, view photos and share messages of support.
>
> To visit the CarePage, please click the link below:
>
> http://www.carepages.com/ServeCarePage?cpn=julianacave
>
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>



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http://groups.yahoo.com/group/parentingchildrenwithmoyamoya/

    To unsubscribe from this group, send an email to:
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