Re: [Parenting Children with Moyamoya] Moyamoya and what to do....
- Hello Li, I have not had the pleasure of seeing Dr. Scott. I am from Florida so we see a doctor at the University of Florida ( Shands) Dr. Mickle did my daughters surgery when she was 11mths old in 1998 When she was diagnosed no one in Florida knew anything about this disease I was not even aware of this website my husband and I tried to get as much research on this as possible but back then there was not much on Moya Moya. Today there is a lot of information on this. My daughter suffered a severe stroke after the surgery but before they were not visible however when the doctors looked a the angiagram they said she should be paralized but she was not. The stroke set us back a great deal however we recovered from it and then in 2001 Dr Pincus did the surgery on the other side of the brain and she had another stroke which the doctors said she would not ever recover from she lost her speech for the second time she was not able to eat, drink, swallow, she could not even use her
tongue. it also made her unable to sit alone walk without someone holding on to her. She is now 6yrs old she is able to talk just like a 3yr old she can walk, run, and do most things a normal child can do. We do have to watch her because anytime she gets very upset she will have a TIA most of the time they only last 5mins to 6hrs. we have to watch other children around her so they do not hit her head because we were told that that could be very harmful to her oh by the way she can also now eat on her on drink out of a cup without help. I only have to feed her when she gets sick and won't eat. I have heard a great deal about Dr Scott and if he is going to do the surgery then I say go ahead now before something happens and he can't do the surgery. We were told if Samantha had a stroke before surgery they would not be able to do it if she was sick they would not be able to put her to sleep. So go ahead do it. GOOD LUCK WITH THIS you and your family are in my prayers. GOD
will take care of his angels.
I am trying very hard to figure out how all of this came about for you and
your daughter. You said she had headaches and trouble seeing and that she had
an MRI which diagnosed her with Moya Moya. Has Dr. Scott seen the MRI films
from the MRI? Was it a Neurologist or Neuro-Radiologist who diagnosed the Moya
I am not a doctor and cannot tell you what to do, but I can tell you how I
feel. When my daughter was diagnosed with Moya Moya, one of the top doctors in
the hospital told me, "She has not had a stroke yet, we should just watch and
wait". In otherwords, just keep waiting until she does have a stroke, and then
we'll think it's serious enough to do something about.
There is no way to know how long it might have taken for my daughter to
suffer a stroke, ....but I know what the results of a stroke can be, and you can
learn alot more from parents whose children suffered strokes before they even
found out about the Moya Moya and had the opportunity to fix it. Many children
are still trying to get their lives back to normal because they did have
strokes and suffer brain damage before having the surgery. After having the
surgery, they have had no more strokes. Strokes are serious and cause permanant
damage to the brain. People can lose the ability to walk, talk, use te
bathroom, think, read, and all kinds of very serious injury to the brain.
For myself, our family, I felt like we were blessed to know ahead of time and
have the opportunity to fix it before my daughter had a stroke. No one wants
their child to have brain surgery, but I promise you and every other parent
on the Moya Moya website would tell you, that having Dr. Scott fix it as soon
as possible is the only thing that makes sense. If you wait, the risk of a
stroke increases with each day.
You do not want that to happen to her. You don't want her to have surgery,
but the alternative of not having it is worse.
Your pediatrician knows you are scared and I am sure he was trying to calm
you down. The best person to talk to is Dr. Scott. Dr. Scott has seen many
many many children with Moya Moya and he knows how serious the situation can get.
Also, if he saw your daughters MRI, he knows how important it is to have the
surgery or I promise you he would not do it. When he first saw my daughters
MRI, he said he did not think the surgery was necessary right away but that we
should monitor it. Later, after the radiologists at his hospital reviewed
the MRI scan and met with him to review it, it was decided that there was not
enough blood flow and we should go ahead and do surgery. Dr. Scott initially
put it off because he did not think it was necessary. If it was not necessary
for your daughter, he would tell you that.
Moya Moya is not a tumor. It is not like removing a growth from her brain.
It is very simple. They will make an incision on her head in front of and
above her ear, they will make a small opening in the bone, he will take an artery
that is right there in her scalp and separate it from the other tissue on her
scalp. He will use a special microscope and take the artery through the hole
to the surface of the brain. He will very carefully open up the outer
covering of the brain (just a thin covering called the dura). He will use tiny
little stitches to attach the artery to the surface of the brain, barely even
touching the brain, then close everything back up.
Please remember, your friends are not doctors and they do not know what Moya
Moya is. Moya Moya will continue to develop and cause arteries that carry
blood to the brain, to close. If you don't create the new blood flow pattern by
attaching the new artery, then eventually, maybe a month, maybe 6 months,
maybe a year or even 2 years, the blood flow will reduce to the point that your
daughter has a stroke. I know you don't want this to happen.
I did not want to wait because it was a gamble I was not willing to take. I
cannot predict the future and I would have no way of knowing how much time my
daughter had before she would suffer a stroke. I could not gamble with her
health. The better of the two options was to fix it so we never had to worry
about it again. Now I can
relax because I don't need to worry any more. I can watch her run and play
and laugh and know that she is safe.
Li, I really don't want to scare you....but I must say that I get scared when
you say that you are thinking about not doing it or that your friends or
family are suggesting that you not do it. Everyone knows that you are scared and
they are worried about you also and I am afraid that they are saying the wrong
thing, to try to make you feel better. They need to understand Moya Moya
before they tell you to not do the surgery and if they do understand it, I know
they will tell you the same as I am telling you....fix it now to protect her
I am sorry if I scared you more by saying this....I would suggest that you go
to the "ParentingChildrenwithMoyaMoya" website and read more of the stories.
These parents told me in August...."Get it done and get it done NOW!!!" I
took them at their word and I think you should too. Dr. Scott won't let you (or
him) do anything that is not necessary to keep her safe.
I know Michelle will help you since her son had surgery on both sides. Read
more of the webgroup messages and I think it will help you understand that
there really are no options.
Take Care, I am praying for you all.
[Non-text portions of this message have been removed]
Yahoo! Groups SponsorADVERTISEMENT
To unsubscribe from this group, send an email to:
Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
Do you Yahoo!?
Free Pop-Up Blocker - Get it now
[Non-text portions of this message have been removed]