Click this link to read a post I like on the moyamoya.com message board...

KELjustKEL

New Poster

Offline

I love YaBB 1G - SP1!

Posts: 2
Bradenton, USA, usa, 451, 286, FL, Florida
Gender: female

MM and pregnancy
Jun 10^th, 2004 at 1:28pm

Hey all. Found out TODAY that my cousin has MM. She is pregnant and just had a stroke. Have been trying to sort through all the information on the Internet but am a little scattered. Can ya'll give some help/facts/figures? This seems to be a syndrome primarily in kids. Are there studies/anecdotes about older survivors?

My scariest question - what's the mortality rate? Will my cousin and her baby survive?
Thanks ya'll for having this site. It's kinda calmed me down.

Back to top

IP Logged

Click Here to visit the Moyamoya.com Facebook page!

hillary

Senior Poster

Offline

My daughter Holly has
MM

Posts: 340
new braunfels, USA, usa, 279, 285, TX, Texas
Gender: female

Re: MM and pregnancy
Reply #1 - Jun 10^th, 2004 at 1:58pm

wow...sorry to hear that, the best thing i can suggest is to speak with a Dr. that specializes in MM. There are some listed on this website.

If I may ask, how old is your cousin, and where is she located? Please tell her about this website and maybe she can take a look around, and get to know some of the people here, and what they have gone through, maybe someone else has gone through what she is.

We wish her the best, and will add her to our prayers

Hillary

Back to top

IP Logged

Sara

Experienced Poster

Offline

I am 15 years post-op
and loving life!

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

Re: MM and pregnancy
Reply #2 - Jun 11^th, 2004 at 3:59pm

Hi KEL:

I have MM and have had a child, and I know there is a lady named Carol here who's daughter has MM and has had one. I had already had my surgeries when I conceived, but the docs still let me deliver and everything was fine. And Carol's daughter found out she was pregnant after having surgery, and everything went great for her, too. And now, she is pregnant again.

I think what is important is for your cousin to go ahead and have the surgery as soon as possible so her brain can start getting the proper blood supply before she has the baby. She should be fine, and the baby, too!!

I understand this must be VERY scary for you and her. How far along is she? DId she have a MAJOR or minor stroke? Where is she located? Who is her doctor? All these things are important. If she can get a doctor who has MM patients, it would be best.

Please let us know how things are going, and feel free to e-mail me. If your cousin is up to it, try to et her on here. It may make her feel better knowing she's not alone!

Sara

Back to top

IP Logged

Roni

Junior Poster

Offline

I love YaBB 1G - SP1!

Posts: 52
Dillon, USA, usa, 195, 162, CO, Colorado
Gender: female

Re: MM and pregnancy
Reply #3 - Jun 11^th, 2004 at 6:19pm

Dr. Masaki Komiyama has very helpful information on MM and pregnancy. You can try going to google.com and typing in Masaki Komiyama moyamoya or copy this long web address
http://sidesearch.lycos.com/?query=Masaki+Komiyama%2C+M%2ED+moyamoya+&first=1&hurl=http%3A%2F%2Fwww003%2Eupp%2Eso-net%2Ene%2Ejp%2Fmoya-moya%2F&gi=0

Pregnancy does present some serious issues for MM patients. Very important to have a doctor with a lot of MM experience.
Good luck
Roni

Back to top

IP Logged

Roni Junior Poster Offline I love YaBB 1G - SP1! Posts: 52 Dillon, USA, usa, 195, 162, CO, Colorado Gender:	Re: MM and pregnancy Reply #4 - Jun 11^th, 2004 at 6:21pm Sorry, once more thing re instructions to access Dr. Masaki Komiyama's web site. Once you get to the long web address, click on the bottom item *Moyamoya Disease* Don't know why we need all of these steps to access the site. Roni
Back to top	IP Logged

Mar

Ex Member

Re: MM and pregnancy
Reply #5 - Jun 11^th, 2004 at 8:24pm

Hi Kel,

I think the first thing you should know is that this is a rare disease and even though she was diagnosed with mm, many neurologists/neurosurgeons do not know enough about it. IMO, You need a mm specialist to guide such a delicate situation, if at all possible. Many are told to do nothing, but this disease is a progressive disease. Surgery is usually the only option. BUT, with a pregnant woman, I personally have no idea whether they could do surgery. That's where a mm specialist would become urgently important to me. As far as your question to help/facts/figures? There is Links above with excellent information and a video that's a must see, it will answer alot of your questions as well. Now about the mortality rate... there's not a clear, cut and dry answer for that, other then to say, from all that I read, IF left untreated the prognoses is not good. Our advice from experience is always to seek a doctor who treats moyamoya, not only one who can do the surgery, because there are different types of surgery to supply blood to the brain, but each supply the blood at a different rate. It would depend on each individual patients situation and it would take a mm expert to know that I would think.

Hope this helped. Your cousin and the baby will be in my prayers. Please keep us posted.

God bless,
Mar

Back to top

IP Logged

Michell

Ex Member

Re: MM and pregnancy
Reply #6 - Jun 12^th, 2004 at 1:47am

Kel
I am so sorry to hear about your cousin and her baby. I am still learning about this disease myself. My 11 month old baby has it and has had two strokes and will probably be having surgery soon. I don't know much, but everyone on the website here is really nice and supportive, you have found a great place. I will keep you and your family, cousin and baby in our prayers. Please keep us updated on what your cousin is told. Thank you for coming to the site and sharing with us. Good luck and God bless, remember He can work miracles!!

Michell

Back to top

IP Logged

KELjustKEL

New Poster

Offline

I love YaBB 1G - SP1!

Posts: 2
Bradenton, USA, usa, 451, 286, FL, Florida
Gender: female

Re: MM and pregnancy
Reply #7 - Jun 12^th, 2004 at 2:11pm

Thank ya'll so much for your replies and support. I live many states away from the rest of my family, so it's hard not being there, but you guys have been awesome.

Just got an update from my fam. Amanda and her husband and my Aunt Melody just got to Stanford yeasterday (which I know from reading the boards is the best place for her.) They are still running tests and everything but her first surgery is scheduled for Tuesday and her second for the week after. They are hopeful about the baby.

The family has been thinking back over her history and we think she's had symptoms since sixth grade (about 11 years). We're so happy the cause has finally been found.

I know I don't have to ask because you guys have been great, but please pray for them both. and for those at Standford, please give a hug and help to the new kids!

I'll keep you posted. Thanks again.

Back to top

IP Logged

rdrjudi New Poster Offline Posts: 35 reading, USA, usa, PA, Pennsylvania Gender:	Re: MM and pregnancy Reply #8 - Jul 10^th, 2004 at 2:36pm I was diagnosed with moya moya about 2 years ago but they wasnt sure but anyways they confirmed it this year they told me i was born like that and thats why i had seizured since i was about 7 or yeard old now im have 2 kids and the pregancys was high risk but i got 2 beuatiful children ;
Back to top	Judy IP Logged

Click Here to visit the Moyamoya.com Facebook page!

Laura

Junior Poster

Offline

Posts: 74
Monroe, USA, usa, 329, 245, LA, Louisiana
Gender: female

Re: MM and pregnancy
Reply #9 - Jul 10^th, 2004 at 10:44pm

Welcome to our "family" Kel!! And please welcome Amanda also. We would love to have her join us when she is able. I am a 39 year old female from Louisiana. I had a stroke in Jan. of this year. The doctors also believe that I have had MM for about ll-12 years at least eventhough I was just diagnosed with it after my stroke only 6 months ago. Eventhough I evidently had it years ago without knowing it, I carried two beautiful daughters to term and went through c-sections with them both. Taylor is almost l0 and Reagan is 5. So, I believe with proper care from a neurologist, and possibly surgery, Amanda will be fine and so with the baby. I do believe that she is in the best hands possbile in California. I will keep you and your family in my prayers. Please keep us updated daily if possible on what is going on, especially if she has surgery next week. Again, welcome!! Laura

Back to top

IP Logged

dw1 New Poster Offline Posts: 21 Pomona, USA, usa, 65, 209, CA, California Gender:	Re: MM and pregnancy Reply #10 - Jul 16^th, 2004 at 10:35am Hi Roni, Can you tell me more about Dr. Komiyama? My fiance and I are considering planning for a family soon. She is "normal" and I am diagnosed with mm. I'd like to know the chances of our baby inheriting mm. Doug
Back to top	IP Logged

carol

New Poster

Offline

I love YaBB 1G - SP1!

Posts: 24
Houston, usa, 273, 302
Gender: female

Re: MM and pregnancy
Reply #11 - Aug 8^th, 2004 at 11:25pm

Hi I haven't been here in so long.My daughter was pregnant when she had her first surgery.We didn't know at the time.She had both surgeries and then went on to have a very good pregancy. Kandice is 3 now and my daughter is having another baby the secone week of Oct. She was really due Nov 2 but the doctor wants to start her labor early.She has felt good through this and works every day.I think every case may be differant.Jennifer had a mini stroke when we first learned she had Moyamoya.
Carol
My e-mail is
carols3471@sbcglobal.net
Going to try and come more often now that I don't work.

Back to top

Carol

IP Logged

carol New Poster Offline I love YaBB 1G - SP1! Posts: 24 Houston, usa, 273, 302 Gender:	Re: MM and pregnancy Reply #12 - Nov 16^th, 2004 at 7:44pm My daughter Jennifer had her second baby after having her surgeries.Everything went real well with this one too.The doctor did take her 3 weeks early just to mack sure she wasn't to big. Carol
Back to top	Carol IP Logged

	Welcome, Guest. Please Login or Register
	NEW search box below... Search Moyamoya.com with Google!