Hi, my name is Sara. I am sorry I am so late to
respond. But, I was dx with MM at the age of 9. I am
now 23. I have never had a stroke (thank God!!). I
would think the arterirgram is the best way to dx MM.
When I first started having TIA's, I had an
arteriorgram, and they told my parents I DID NOT have
MM, because it only was on one sidde. Then, a year
later, I had another one, and it had progressed. This
is when they FINALY diagnosed me. I was very luck I
didn't have a stroke while waiting for them to get
their acts together...

I would suggest seeing a doctor who is experienced
with MM. I know Dr. Scott is a really good one. The
reason I suggest this is because many doctors want to
call MM by "other names" when it is in fact Moya
Moya...

I hope all is going well. Please keep us posted. Thank
you! Feel free to email me if you want. Just be sure
to put MM in the subject so I don't delete it...

God Bless your family!

Sara
--- michelle.marengo@... wrote:

> My son was dx'd after a TIA last fall, and the
> surgery took place 2 weeks after diagnosis. It was
> 99% sure after the MRI, but then 100% sure after the
> angiogram. Where are you? Are you near Boston at
> all? I would see if he concurs with your
> doctor...the carotid artery is in the front, right?
> Could that be the difference - which arteries it's
> affecting?
>
> David is 9 months out of surgery now, and just had a
> TIA (after all this time!) We're going back in for
> an MRI this Friday night, but Dr. Scott did say that
> this could happen up to a year after the surgery.
> Wish us luck...
>
> Take care - and let me know if I can help! Michelle
>
> -------------- Original message from "dsrm5482" :
> --------------
> My son was not dx'd until after a stroke, but I have
> a question for
> you to ask the DR's.: what would they do differently
> if it
> is "internal carotid arterial stenosis (but isn't
> that what MM is?)
> and not MM?  It seems to me that if there is a
> reduction in blood
> flow to the brain, you need to get it there! (ie,
> surgery).  From
> what I've read in the past, surgery has been the
> best treatment for
> the symptoms of MM.  Most patients do very well
> after surgery.  Your
> note doesn't say what led you to get the MRI/MRa's;
> has he had TIA's
> or seizures?
> To answer your question about has anyone been dx'd
> b4 a stroke, I
> also reccommend the message board at Moyamoya.com as
> there are a few
> whose children were dx'd b4 stroke and received
> surgical
> intervention.
> Good luck to you and your son.  another bit of
> advice I'd like to
> offer is to pray for guidance (& peace!).  It sure
> worked for me!
>
> Sue
>
>
>
> --- In
> parentingchildrenwithmoyamoya@yahoogroups.com,
> "jcamp9193"
> <jcamp9193@y...> wrote:
> > My 10 year old son does not have a definate
> diagnosis of
> moyamoya
> > but they are trying to decide if he has moyamoya
> or inernal
> carotid
> > artery stenosis.He has had 2 mri/mra's and a
> arteriogram.both
> > mri/mra's stated begining stages of moyamoya, the
> arteriogram was
> > inconclusive.We have an apointment in a couple
> weeks to talk to
> the
> > Dr.and hopefully I can get my questions answered
> then but if there
> > is anyone out there who was diagnosed before a
> stroke I would
> > greatly apreciate any info on what led to a
> definate
> diagnosis.Right
> > now I feel like I am just waiting for something to
> happen to him
> and
> > am feeling very helpless and am trying to educate
> myself about
> both
> > moyamoya an internal carotid artery stenosis.I'd
> apreciate any
> info
> > or experiance anyone has had thanks
>
>
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>
> [Non-text portions of this message have been
> removed]
>
>





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We finally got some results on Austin's arteriogram. Dr. Troup
said the original reading for the test showed no change from March
(pre-surgery).  But after further studying the results, he, along
with the radiologist, saw some collateral growth. He said he was
pleased with what he saw. We will plan to do surgery the week before
Thanksgiving.



Thank you all for your thoughts and prayers. Please continue to
remember him in your prayers.



Doug, Danette, Britleigh & Austin

Glad to hear all is going well. I will keep your family in my prayers.
Rena

dmvcpa_drogers <dsrogers93@...> wrote:

We finally got some results on Austin's arteriogram. Dr. Troup
said the original reading for the test showed no change from March
(pre-surgery).  But after further studying the results, he, along
with the radiologist, saw some collateral growth. He said he was
pleased with what he saw. We will plan to do surgery the week before
Thanksgiving.



Thank you all for your thoughts and prayers. Please continue to
remember him in your prayers.



Doug, Danette, Britleigh & Austin





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

Danette,
      We are so glad to hear the good news.  Austin was in our thoughts and
prayers all day of the arteriogram.  We will continue to pray for him and your
family.
Take care,
The Phillips family

dmvcpa_drogers <dsrogers93@...> wrote:

We finally got some results on Austin's arteriogram. Dr. Troup
said the original reading for the test showed no change from March
(pre-surgery).  But after further studying the results, he, along
with the radiologist, saw some collateral growth. He said he was
pleased with what he saw. We will plan to do surgery the week before
Thanksgiving.



Thank you all for your thoughts and prayers. Please continue to
remember him in your prayers.



Doug, Danette, Britleigh & Austin





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

My Son had surgery for moymoya on August 20,04.  Since then I havent
really noticed any thing out of the ordinary, but the other day he
became really pale.  He was so pale that it was scary.  I remeber
that this happened a few times before he had surgery and we had
chalked it up to being tired, but now that I know he has moyamoya I
was wondering if it had anything to do with that.  I have taken
great care to make sure that he doesnt get overly tired and that he
eats right.  Maybe some of you have had similar experiences?  Thank
you for your time.
Sincerely,
Rebecca Phillips

I'm wondering if there are any parents of adult children with Moya
Moya in this group?  My daughter was diagnosed at age 19 in 1995,
when she was a sophomore in college.  Unfortunately, she'd been
misdiagnosed three years before, through a series of missteps, and
so we sent her off to college completely unaware of what might
happen to her.  She wasn't diagnosed with MM until after she had a
very large stroke in November of '95.  Although she has recovered a
lot since that time, she is still quite disabled and will always be
dependent on someone.  She has a great deal of difficulty
communicating, cannot read or write, and several other problems.
After all this time, we've adjusted fairly well, I think, to her
life as it now is; we wonder, though, what we might expect in the
future.  She did have surgery at the University of Virginia after
her stroke, but it was only to preserve/improve the vasculature on
the right side of her brain; her left side was almost completely
destroyed by the stroke, and nothing much could be done for that.
I'm interested in hearing from anyone who might be further along
this road than we are, who could share their experiences.  Thanks.

Rebecca,
  I have not noticed that with Austin. I hope your son is doing better. I
would definitely call the doctor on this one, if you are still concerned.

Danette


My Son had surgery for moymoya on August 20,04.  Since then I havent
really noticed any thing out of the ordinary, but the other day he
became really pale.  He was so pale that it was scary.  I remeber
that this happened a few times before he had surgery and we had
chalked it up to being tired, but now that I know he has moyamoya I
was wondering if it had anything to do with that.  I have taken
great care to make sure that he doesnt get overly tired and that he
eats right.  Maybe some of you have had similar experiences?  Thank
you for your time.
Sincerely,
Rebecca Phillips

Hello

My names Jane, sorry to hear of your daughters illness.   My daughter also has
MM she is 6 and she was diagnosed at about 2.   there is a girl who writes to
this site called Sara she has MM and i think shes 21, she will probably write to
you when she sees your message, also the man who made this site, has MM im not
sure of his age, Im sure hes late 20s, have you looked at the site, it has lots
of information, the adress is moyamoya.com/guests

I wish you look for the future, take care        Jane xxxxxxx





tylergram56 <tylergram@...> wrote:
I'm wondering if there are any parents of adult children with Moya
Moya in this group?  My daughter was diagnosed at age 19 in 1995,
when she was a sophomore in college.  Unfortunately, she'd been
misdiagnosed three years before, through a series of missteps, and
so we sent her off to college completely unaware of what might
happen to her.  She wasn't diagnosed with MM until after she had a
very large stroke in November of '95.  Although she has recovered a
lot since that time, she is still quite disabled and will always be
dependent on someone.  She has a great deal of difficulty
communicating, cannot read or write, and several other problems.
After all this time, we've adjusted fairly well, I think, to her
life as it now is; we wonder, though, what we might expect in the
future.  She did have surgery at the University of Virginia after
her stroke, but it was only to preserve/improve the vasculature on
the right side of her brain; her left side was almost completely
destroyed by the stroke, and nothing much could be done for that.
I'm interested in hearing from anyone who might be further along
this road than we are, who could share their experiences.  Thanks.




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

HI,

My grandson Reese (age 4) had surgery on the right side June 21, 04, and I
ve noticed that a couple of times before a stroke, he was cold and pale (was
outside playing in the sprinkler water at the time) and it brought on a TIA.

I've noticed that cold really constricts the blood vessels and so could
cause another stroke from decreased blood flow.

Also, does anyone else have a problem with their child's weight? Reese is 41
in. tall, and weighs 30 lbs. If so, what have you been able to do to help
gain weight? We're currently feeding him 3 cans of Boost a day, and he is a
good eater.

Thanks,

Sandi :)



-------Original Message-------

From: parentingchildrenwithmoyamoya@yahoogroups.com
Date: 10/17/04 14:03:02
To: parentingchildrenwithmoyamoya@yahoogroups.com
Subject: [Parenting Children with Moyamoya] Digest Number 185

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There are 2 messages in this issue.

Topics in this digest:

1. Any parents of adult children with MM?
From: "tylergram56" <tylergram@...>
2. Rebecca
From: "Danette Rogers" <dsrogers93@...>


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Sun, 17 Oct 2004 06:28:00 -0000
From: "tylergram56" <tylergram@...>
Subject: Any parents of adult children with MM?


I'm wondering if there are any parents of adult children with Moya
Moya in this group? My daughter was diagnosed at age 19 in 1995,
when she was a sophomore in college. Unfortunately, she'd been
misdiagnosed three years before, through a series of missteps, and
so we sent her off to college completely unaware of what might
happen to her. She wasn't diagnosed with MM until after she had a
very large stroke in November of '95. Although she has recovered a
lot since that time, she is still quite disabled and will always be
dependent on someone. She has a great deal of difficulty
communicating, cannot read or write, and several other problems.
After all this time, we've adjusted fairly well, I think, to her
life as it now is; we wonder, though, what we might expect in the
future. She did have surgery at the University of Virginia after
her stroke, but it was only to preserve/improve the vasculature on
the right side of her brain; her left side was almost completely
destroyed by the stroke, and nothing much could be done for that.
I'm interested in hearing from anyone who might be further along
this road than we are, who could share their experiences. Thanks.





________________________________________________________________________
________________________________________________________________________

Message: 2
Date: Sun, 17 Oct 2004 16:24:06 -0400
From: "Danette Rogers" <dsrogers93@...>
Subject: Rebecca

Rebecca,
I have not noticed that with Austin. I hope your son is doing better. I
would definitely call the doctor on this one, if you are still concerned.

Danette


My Son had surgery for moymoya on August 20,04. Since then I havent
really noticed any thing out of the ordinary, but the other day he
became really pale. He was so pale that it was scary. I remeber
that this happened a few times before he had surgery and we had
chalked it up to being tired, but now that I know he has moyamoya I
was wondering if it had anything to do with that. I have taken
great care to make sure that he doesnt get overly tired and that he
eats right. Maybe some of you have had similar experiences? Thank
you for your time.
Sincerely,
Rebecca Phillips









________________________________________________________________________
________________________________________________________________________



------------------------------------------------------------------------
Yahoo! Groups Links




------------------------------------------------------------------------

Tyler:

I am sorry, I do not have an adult child with MM, but
I don't know if you have gone to moyamoya.com... It is
a great site and there are lots of people on there
with similiar situations.

I am 23 and have MM, but was diagnosed at age 8 before
any major stroke. I had bilateral surgery, and have
been okay since. I know stroke is a VERY difficult
thing to work through and MM has more mysteries than
answers. I think the web-site will introduce you to
some really neat people who have dealt with what you
have been facing.

I hope this helps. Again... www.moyamoya.com!

- Sara
--- tylergram56 <tylergram@...> wrote:

>
> I'm wondering if there are any parents of adult
> children with Moya
> Moya in this group?  My daughter was diagnosed at
> age 19 in 1995,
> when she was a sophomore in college.  Unfortunately,
> she'd been
> misdiagnosed three years before, through a series of
> missteps, and
> so we sent her off to college completely unaware of
> what might
> happen to her.  She wasn't diagnosed with MM until
> after she had a
> very large stroke in November of '95.  Although she
> has recovered a
> lot since that time, she is still quite disabled and
> will always be
> dependent on someone.  She has a great deal of
> difficulty
> communicating, cannot read or write, and several
> other problems.
> After all this time, we've adjusted fairly well, I
> think, to her
> life as it now is; we wonder, though, what we might
> expect in the
> future.  She did have surgery at the University of
> Virginia after
> her stroke, but it was only to preserve/improve the
> vasculature on
> the right side of her brain; her left side was
> almost completely
> destroyed by the stroke, and nothing much could be
> done for that.
> I'm interested in hearing from anyone who might be
> further along
> this road than we are, who could share their
> experiences.  Thanks.
>
>
>
>




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Hi Danette,

My daughter has had surgery as well and we have experienced these
episodes.  I have been keeping a journal of dates and what she was
doing prior to the "pale" event in order to see if there is a
pattern.  She is usually very tired and a good rest usually helps.  I
would mention these events to your neurosurgeon, as you never know
with these kids.  Sorry I'm not much help, but at least you know you
are not alone.  I'm just brand new to this group and have never
talked on line to anyone about my daughter.  I'm hoping to become a
little less apprehensive about doing so.  Hope your son is doing well
now.


-- In parentingchildrenwithmoyamoya@yahoogroups.com, "Danette Rogers"
<dsrogers93@b...> wrote:
> Rebecca,
>  I have not noticed that with Austin. I hope your son is doing
better. I
> would definitely call the doctor on this one, if you are still
concerned.
>
> Danette
>
>
> My Son had surgery for moymoya on August 20,04.  Since then I havent
> really noticed any thing out of the ordinary, but the other day he
> became really pale.  He was so pale that it was scary.  I remeber
> that this happened a few times before he had surgery and we had
> chalked it up to being tired, but now that I know he has moyamoya I
> was wondering if it had anything to do with that.  I have taken
> great care to make sure that he doesnt get overly tired and that he
> eats right.  Maybe some of you have had similar experiences?  Thank
> you for your time.
> Sincerely,
> Rebecca Phillips

My son had an EEG done because of the pale episodes and we found
that he has moderate signs of seizures.  He has suffered two strokes
and the seizures are showing up in the same area that he had one of
his strokes.  As for now our neurologist doesnt see any reason for
putting him on medication, but we were given diastat in case a
larger seizure was to occur.  At this time she also decided to hold
off on an MRI because she didnt want to put him through any more
than he had already been through without more evidence of problems.
Thank you for your replies to my question about the pale episodes.
It really helps to have support from other parents.  Hope everything
is going good for everyone!
Take care,
Rebecca

Good morning all. I wanted to let you know Austin's surgery is set for
December 2nd. He will have his left side done this time. The right
side was done in April. Please remember him in your thoughts and
prayers.

Danette

Danette,

We will be keeping Austin in our prayers!  And the rest of your
family as well.  God Bless.

Heather

Danette and family

Hope everything gos well, my thoughts and prayers will be with you

Lots of love from Jane, Chloe and Thomas xxxxxxx



dmvcpa_drogers <dsrogers93@...> wrote:
Good morning all. I wanted to let you know Austin's surgery is set for
December 2nd. He will have his left side done this time. The right
side was done in April. Please remember him in your thoughts and
prayers.

Danette





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

Danette, I'm so glad you have a date set for surgery.Please know our prayers
are with your family.Keep us updated please...
Mary Grace


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

Will be praying for Austin and your family - for guidance for his
Dr's, healing and peace.  May God be with you..
sue


--- In
parentingchildrenwithmoyamoya@yahoogroups.com, "dmvcpa_drogers"
<dsrogers93@b...> wrote:
>
> Good morning all. I wanted to let you know Austin's surgery is set
for
> December 2nd. He will have his left side done this time. The right
> side was done in April. Please remember him in your thoughts and
> prayers.
>
> Danette

--- dmvcpa_drogers <dsrogers93@...> wrote:
Danette, December 2nd is my husband's birthday, so I'm
sure it will be a good day for surgery.  We'll keep
Austin -- and you -- in our prayers.

Denyse
>
> Good morning all. I wanted to let you know Austin's
> surgery is set for
> December 2nd. He will have his left side done this
> time. The right
> side was done in April. Please remember him in your
> thoughts and
> prayers.
>
> Danette
>
>
>
>
>




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Thank you all for all the kind thoughts. I am glad I am apart of this
great family, and I know people everywhere will be praying for my
little guy.
He is getting really nervous. This will be surgery number 13 for him,
so he knows what is coming. {BTW, I am NOT superstitious:0)} I bought
him some "Going to the Hospital" books from Amazon. They are helping
alot. He actually took one to school today with him to share with his
class. If you are interested, I can share the titles with the list.

Thanks again for the support.
Danette & family

Austin’s surgery time is 1:50pm Thursday. We have to be at the surgery
center at 12noon. Please keep Austin in your prayers.

Danette


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

Danette,
      Thank you for keeping us informed.  We will definitely be praying for you
all, especially Austin.  He is such a brave little man.  Would you tell him that
the has friends in Montana that will be thinking about him tomorrow and in the
days to come.  We will be anxiously waiting the good news!
Take care of you and yours,
Sincerely,
The Phillips family - Jay, Rebecca, Koe  4 years old (surgery 8/20/04), Kayo 2
years old (surgery 7/19/2004)

Danette Rogers <dsrogers93@...> wrote:
Austin’s surgery time is 1:50pm Thursday. We have to be at the surgery
center at 12noon. Please keep Austin in your prayers.

Danette


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


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

We will be thinking of Austin and all your family today,

All our love Jane and Family xxxxxxx



Danette Rogers <dsrogers93@...> wrote: Austin’s surgery time is 1:50pm
Thursday. We have to be at the surgery
center at 12noon. Please keep Austin in your prayers.

Danette


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


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

Danette,

Please tell Austin that we are praying for him in Michigan as well.
Wish we could do more, but we know that prayer are the greatest gift
we can offer to you all now.


Sincerely,
Clark, Heather, Ellie, Erik 9 yrs old (surgery 5/2000 and 10/2000)
and Katie 7 yrs old (surgery 12/1999)

Well, his surgery was scheduled for 1:50. Doug & I walked him down at 4:50,
and surgery started at 6:21. The procedure was finished at 8:00, and then
they had to close him up. It was 9:00pm before he got to the PICU, then
about 9:20 when we got to go see him. He was groggy, but he knew we were in
there. He rested really well last night, and did well.

I am now at the R McD house, and going to get “freshened up”. Doug and my
parents are with him now. We will stay in the PICU until tomorrow, and then
go down to the floor. Thank you all for all your thoughts and prayers. Dr.
Troup said he did GREAT. Troup said Austin is just a pro now…and such a
champ.

Austin is in PICU room #10. We are not able to have our cell phones on in
there. The number to the PICU is (478) 633-1560. You can ask to be
transferred to room #10, or ask for Austin’s room.

Thank you all, again.

Danette



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

HI

Im really glad all went well, it must be a big releif for you that the surgery
is over, It is an awful time I remember well, My thoughts have been with you all
week, I wish Austin a speedy recovery and I hope you all have a lovely
Christmas, All my love Jane and familyxxxxxxx



Danette Rogers <dsrogers93@...> wrote: Well, his surgery was scheduled
for 1:50. Doug & I walked him down at 4:50,
and surgery started at 6:21. The procedure was finished at 8:00, and then
they had to close him up. It was 9:00pm before he got to the PICU, then
about 9:20 when we got to go see him. He was groggy, but he knew we were in
there. He rested really well last night, and did well.

I am now at the R McD house, and going to get “freshened up”. Doug and my
parents are with him now. We will stay in the PICU until tomorrow, and then
go down to the floor. Thank you all for all your thoughts and prayers. Dr.
Troup said he did GREAT. Troup said Austin is just a pro now…and such a
champ.

Austin is in PICU room #10. We are not able to have our cell phones on in
there. The number to the PICU is (478) 633-1560. You can ask to be
transferred to room #10, or ask for Austin’s room.

Thank you all, again.

Danette



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


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

Danette,
      Such great news!  I thought about you all day yesterday.  I wasnt sure of
the time change, but I knew that yesterday was very trying for all of you. 
Thank God the surgery is over and now the recovery process starts.
      My daughter was scheduled for surgery at 9am and we got right in, in fact
it was about 9:30 and they had started, but with Koes we were scheduled for 1pm
and didnt get in until 4pm.  That is such a long wait especially when they
havent eaten.  These little ones of ours  have endured a lot, it is amazing to
me how well they deal with all that is going on.
      From the time you wrote that Austins surgery was scheduled for yesterday I
kept finding myself thinking of you and how I felt when the days were getting
closer to the kid's surgeries.  My prayer is that through all of this you all
will find joy and peace.  I know that prayer is the only thing that keeps me
going at times.

We will continue to pray for you all.

Your friends in Montana,
Jay, Rebecca, Koe and Kayo

Danette Rogers <dsrogers93@...> wrote:
Well, his surgery was scheduled for 1:50. Doug & I walked him down at 4:50,
and surgery started at 6:21. The procedure was finished at 8:00, and then
they had to close him up. It was 9:00pm before he got to the PICU, then
about 9:20 when we got to go see him. He was groggy, but he knew we were in
there. He rested really well last night, and did well.

I am now at the R McD house, and going to get “freshened up”. Doug and my
parents are with him now. We will stay in the PICU until tomorrow, and then
go down to the floor. Thank you all for all your thoughts and prayers. Dr.
Troup said he did GREAT. Troup said Austin is just a pro now…and such a
champ.

Austin is in PICU room #10. We are not able to have our cell phones on in
there. The number to the PICU is (478) 633-1560. You can ask to be
transferred to room #10, or ask for Austin’s room.

Thank you all, again.

Danette



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

Austin has made it to the floor. We were moved last night, to room #302. The
phone number is (478) 633-8302. This is the direct line to our room.

Austin is doing great. His swelling is almost gone, and he is not in any
pain. Not any he admits to anyway. :-)

Ok, Dr. Troup just came by, and we are going home in the morning. :-) :-)

Thank you all for your thoughts and prayers.

Doug, Danette Britleigh & Austin




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

Wonderful news, isn't it wonderful how children heal so well.

Danette Rogers <dsrogers93@...> wrote:Austin has made it to the floor.
We were moved last night, to room #302. The
phone number is (478) 633-8302. This is the direct line to our room.

Austin is doing great. His swelling is almost gone, and he is not in any
pain. Not any he admits to anyway. :-)

Ok, Dr. Troup just came by, and we are going home in the morning. :-) :-)

Thank you all for your thoughts and prayers.

Doug, Danette Britleigh & Austin




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

Danette,
      Amazing!  We are so happy for Austin.  No pain, that is truely a blessing. 
I bet it will be nice for all of you to get home.  I know that after both of my
childrens surgeries all I wanted to do was take them home.  God has answered our
prayers!
Our thoughts are with you,
The Phillips Family,
Jay, Rebecca, Koe and Kayo



Danette Rogers <dsrogers93@...> wrote:
Austin has made it to the floor. We were moved last night, to room #302. The
phone number is (478) 633-8302. This is the direct line to our room.

Austin is doing great. His swelling is almost gone, and he is not in any
pain. Not any he admits to anyway. :-)

Ok, Dr. Troup just came by, and we are going home in the morning. :-) :-)

Thank you all for your thoughts and prayers.

Doug, Danette Britleigh & Austin




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

WOW, That is awesome news!!!! I'm so glad all went well. Keep us posted.
Mary Grace


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