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LisaH

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Be thankful in all circumstances

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ArlingtonHts, USA, usa, 358, 120, IL, Illinois
Gender: female

?? for female MoyaMoyaers
Feb 20^th, 2004 at 4:06pm

For those females with Moya Moya, both child and adult, what, if anything, has your doctor(s) said about having children? I don't mean in the genetic sense but health-wise for you. I was under the impression that as long as the blood flow to the brain is good (corrected via surgery) and maybe a C-section for delivery, that it is okay. Now I am hearing otherwise. This is troubling me and I would appreciate hearing other doctors opinions on this subject. If your doctor has never brought up this topic could you please do me a favor by asking the next time you speak to him/her? I would really appreciate any feedback on this. P. S. Shari do you think you could ask Dr. Scott about this (along with all the other stuff!) when you see him in March?

Lisa

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« Last Edit: Feb 20^th, 2004 at 4:11pm by LisaH »

"Two roads diverged in a wood, and I--I took the one less traveled by, and that has made all the difference." - Robert Frost

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STrantas

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MoyaMoya Survivor Since
2003

Posts: 1154
Philadelphia, USA, usa, 490, 122, PA, Pennsylvania
Gender: female

Re: ?? for female MoyaMoyaers
Reply #1 - Feb 20^th, 2004 at 4:48pm

Lisa - Absolutely - it's already on my list. My mom already asked this question of my Neurologist. We were told that most likely I would be considered high risk and would be monitered more closely - plus you can almost guarantee a c-section. Pregnancy and labor put a lot of stress on your body. But yes, I will run this by Dr. Scott when I visit.

-Shari

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A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04

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yoki New Poster Offline I love YaBB 1G - SP1! Posts: 19 houston, USA, usa, 293, 288, TX, Texas Gender:	Re: ?? for female MoyaMoyaers Reply #2 - Feb 23^rd, 2004 at 2:08pm It depends . i was diagnosed after having a miscarriage at 5 months with twins. I was told not to have children again, but thank God I have 2 children already. Check it out . i think it has something to do with was trigger the MM.
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jenna

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If life keeps kicking
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eugene, USA, usa, 38, 85, OR, Oregon
Gender: female

Re: ?? for female MoyaMoyaers
Reply #3 - Feb 28^th, 2004 at 9:51am

Hello my name is jenna and I had my surgery this last july when I was diagnosed with this disease and I asked my doctors if I had children if they would have it too but they couldn't answer that due to the lack of knowledge this disease but they did mention that during pregnancy I would definitely have to be monitored by a physician that understood my condition. this isn't anything you haven't already heard though. Roll Eyes

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Nancy_N.

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My daughter Mandy Has
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Jasper, USA, usa, 436, 230, GA, Georgia
Gender: female

Re: ?? for female MoyaMoyaers
Reply #4 - Feb 29^th, 2004 at 11:16am

My daughter has no children yet and the Doctors told her there is no reason she couldn't have children she has had the 2 mm surgeries. I'm sure closer monitoring would be in order thats kind of common sense. But they also said my other child does not have to be tested nor does it mean other children you have will necessarily have it. They're are people who have had children already with mm. I think now I'm not positive there were people on this site saying so before the new format, going back a ways when the support group was new. Smiley

Nancy

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STrantas

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MoyaMoya Survivor Since
2003

Posts: 1154
Philadelphia, USA, usa, 490, 122, PA, Pennsylvania
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Re: ?? for female MoyaMoyaers
Reply #5 - Mar 3^rd, 2004 at 3:45pm

LisaH wrote on Feb 20^th, 2004 at 4:06pm:

P. S. Shari do you think you could ask Dr. Scott about this (along with all the other stuff!) when you see him in March?

Lisa - my appointment with Dr. Scott was canceled today - he had an emergency surgery. I'm am not rescheduled until 4/15 but I will still ask him when I get there!

-Shari

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A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04

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LisaH Senior Poster Offline Be thankful in all circumstances Posts: 261 ArlingtonHts, USA, usa, 358, 120, IL, Illinois Gender:	Re: ?? for female MoyaMoyaers Reply #6 - Mar 3^rd, 2004 at 11:22pm Oh that's too bad Shari. I'm bummed for you (and myself!) as I was looking forward to your appointment and all that Dr. Scott had to say. Well, we will just have to wait a little longer for our answers. Thanks for the heads up! Lisa
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alice_moya

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I love YaBB 1G - SP1!

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west hartford, USA, CT, Connecticut
Gender: female

Re: ?? for female MoyaMoyaers
Reply #7 - Mar 4^th, 2004 at 3:58pm

Hello, Lisa

I am no doc tor, but what I think is that it would depend on how long you had the disease. My doctor recommended I not have children when I was of child bearing age. Of course that was when the doctors thought I had MS, and when I was diagnosed with Moya Moya, it was too late. Wish I could be more help. Good luck.
Alice

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carol

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Houston, usa, 273, 302
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Re: ?? for female MoyaMoyaers
Reply #8 - Mar 13^th, 2004 at 8:45pm

My daughter was pregnant at the time she had her surgeries which at the time we didn't know.She went through the pregancy real well and had Kandice with no problems at all.She was high risk but just because the doctors never had any one with MM.She was numbed completely because they only wanted her to push when it was almost time.I wouldn't worry at all if she has another one.

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Carol

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freckles

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Moyamoya Survivor!!

Posts: 86
Lakeland, FL
Gender: female

Re: ?? for female MoyaMoyaers
Reply #9 - Mar 15^th, 2004 at 3:52pm

Hey Lisa,

That was one of the first questions I asked Dr. Steinberg after my first surgery, not only that but if I could still take asprin during my pregnancy. He basically said that while doctors will have to keep an eye on me I should be able to both take asprin during my pregnency and have children safely. Hope this helped.

Freckles

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Sara

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I am 15 years post-op
and loving life!

Posts: 208
Houston, USA, usa, 291, 279, TX, Texas
Gender: female

Re: ?? for female MoyaMoyaers
Reply #10 - May 18^th, 2004 at 2:24pm

Well,

I am responding to an old post here... not sure how I missed it. But, I am quite sure that us MM can have kids. I actually had one. What they did with me is monitored my blood pressure more closely. I delivered vaginally, they gave me an early epidural. And they didn't let me push, they sorta pulled her out...

Anyways, I had soooo many tests done while I was pregnant and my docs talked to a lot of other docs, and they decided it would be safe not to have a c-section, because that causes clotting (possibly).

EVERYTHING turned out great. It was a much bigger ordeal than just a "normal" lady, but, well worth it!

If any one has questions about this, feel free to contact me via e-mail.

Sara

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Annica

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My daughter lives with
mm

Posts: 173
Stockholm, Sweden, europe, 317, 154
Gender: female

Re: ?? for female MoyaMoyaers
Reply #11 - May 18^th, 2004 at 4:06pm

Hi Sara!

Being the mother of a girl that will hopefully grow up and some day in the future will want to have kids it really comforts me to hear that it was perfectly OK for you to have a baby and that it went so well. The way I understand it is was no other inconvenience for you than all the tests during pregnancy and perhaps during delivery? My natural questions are: would you go through it again without hesitating?
How old is your daughter and did they test her for mm?
Sorry about all the questions but I really want to know because this is one of my big worries for my wonderful "babys" future!
When that day comes (in 15-20 years or so) I hope that most of you will still be interested in answering all my questions ´cause there aren´t a lot of answers around where we live!!

Take care,
Annica

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Sara

Experienced Poster

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I am 15 years post-op
and loving life!

Posts: 208
Houston, USA, usa, 291, 279, TX, Texas
Gender: female

Re: ?? for female MoyaMoyaers
Reply #12 - May 18^th, 2004 at 5:08pm

Hey Annica:

I would not hesitate, and am planning on trying again. My doctors are timid, just because it is harder on us MMer's bodies than others... I am on a med right now that causes birth defects, but as soon as I get of it, I will....

I had Emily when I was only 18 (she was a surprise

)
She is 5 now, and has not been tested for MM but seems fine. If she starts having any problems, we will test her then.

I really don't believe this is hereditary although, I know some do. Well, let's put it this way: I HOPE it isn't

I was dx with MM when I was 8, and docs always told my mom, and me I would be able to have kids.

The bottom line is, they just have to make it as simple on the body as possible.

I know of others on this site that have kids post dx... Carol's daughter is pregnant now for the 2nd time, and I think is doing well so far.

Everyone pray for me, that I will be able to get off this med, so I can have another

I hope it works out!

Take care Annica:

Sara

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Mar Ex Member	Re: ?? for female MoyaMoyaers Reply #13 - May 18^th, 2004 at 8:38pm You bet Sara, always! Both you and Louise will be in my prayers.
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STrantas MM.com Benefactor Offline MoyaMoya Survivor Since 2003 Posts: 1154 Philadelphia, USA, usa, 490, 122, PA, Pennsylvania Gender:	Re: ?? for female MoyaMoyaers Reply #14 - May 19^th, 2004 at 11:20am Sara - Thanks for the info! It's always good to hear sucesses and experiences for people that have "been there"! Thanks for sharing! -Shari
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carol New Poster Offline I love YaBB 1G - SP1! Posts: 24 Houston, usa, 273, 302 Gender:	Re: ?? for female MoyaMoyaers Reply #15 - May 25^th, 2004 at 12:20am My daughter had Kandice not quiet 9 months after she had her surgeries and is now 3 years later having another one.So far she is 4 months and everything is fine. Carol
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Sara Experienced Poster Offline I am 15 years post-op and loving life! Posts: 208 Houston, USA, usa, 291, 279, TX, Texas Gender:	Re: ?? for female MoyaMoyaers Reply #16 - May 25^th, 2004 at 8:45am I am sure Jen will have another beautiful baby!! Congrats again. I am thinking of her often! Sara
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