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Pregnancy and MoyaMoya? (Read 2657 times)
givin.to.fly
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fargo, USA, usa, 275, 63, ND, North_Dakota
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Pregnancy and MoyaMoya?
Dec 1st, 2007 at 2:46pm
 
Hello Everyone!

I'm new to the board and have a question or two for all of you experienced people!  Just a little background info for you..

I'm 21 years old and was officially diagnosed with unilateral MoyaMoya on the left side of my brain in August.  I say officially because I also had, had a stroke at 13 (the blood clot kind) after being on the pill. My neurologist at the time thought the stroke was because of this MoyaMoya syndrome but a neurosurgeon just thought it was a "spontaneous dissection".  So I was managed on a regular 325mg aspirin a day until August of this year when I had a hemorrhagic stroke and was diagnosed with MM. 

I went out to Boston Mass General (I'm from North Dakota, don't laugh!) and had an EDAS performed on 10/3/07.  The surgery went well, no complications thus far and I came home on 10/13/07. Then I found out on 11/16 that I am pregnant.  So you can imagine how terrified we all are that I just had surgery, don't know if it worked, and am now pregnant.  Currently I am 8 weeks along, and no I was not pregnant at the time of surgery.  Because this is such an unknown disease up here in ND my doctors aren't sure what exactly to do. 

So my questions are does anyone know of someone that has been pregnant and had MM?  Or could anyone steer me in the direction of some info on pregnancy and MM? 

I'm still taking the aspirin and verapamil as recommended by my doctors (OB and Neurologist) and am scheduled to see some sort of specialist in St. Cloud on Wednesday. 

Any advice or information that you know of would be greatly appreciated though.

Thanks!

-Holly
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Mar
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Re: Pregnancy and MoyaMoya?
Reply #1 - Dec 1st, 2007 at 5:46pm
 
Hi Holly, Smiley Welcome to our MM family!

First off, CONGRATULATIOS girlfriend!! What a blessing! I don’t know your specifics or how good your blood flow is at this point after surgery, to say if it would be safe throughout your pregnancy without a MM specialist, but I can tell you that many MM members here have gotten pregnant and went through their pregnancy wonderfully when they had successful surgery for MMD. Mostly all of them said that C-Section had to be the method of delivery though, as their doctors didn’t want any pressure on the brain as with regular delivery. There are doctors that specialize in “high-risk pregnancies”, and that’s what most MM patients’ said they had, and one that’s familiar with MMD. They also said that anesthesia during the C-section was very important for a MM patient as well, and that’s why the anesthesiologist should also be familiar with this disease, because certain anesthesia cannot be administered with anything that constricts the vessels or increases blood pressure like some do. The tiny MM vessels are so very sensitive to anesthesia. They say your blood circulation increases (as it is supposed to do with pregnancy normally) so having MMD; you can see the need of a “high-risk pregnancy doctor” for special care to help avoid any possible chance of a hemorrhage or stroke during your pregnancy. You had the EDAS, so I would think it would take time to improve your blood flow, so whether it’s safe in your case would be up to a MM specialist to determine, IMO.

Bottom line, to be safe, I think it’s best that your care be monitored by a staff that’s familiar with MM. Hopefully some MM’er’s who went through it personally will post and give you a better idea than I can. I just wanted to welcome you here and let you know we’re here for you and to let you know you’ll definitely be in my thoughts and prayers.

Please keep us posted.

Mar
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MMnewtUt
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Re: Pregnancy and MoyaMoya?
Reply #2 - Dec 2nd, 2007 at 12:20am
 
Hello Holly,
     Welcome!  Congrats on the preggers! ;Grin  I know you are nervous, try to stay calm- for youself and the embryo.  I had two pregnancies BEFORE I found out about my MoyaMoya.  I really don't want to scare you-so please understand my pregnancies were PRE-MM.
     Neverless, my first pregnancy I had problems with Hypertension.  It progressed to pre-eclampsia.  My son was delivered early.  He was 29 weeks gestation.  He is now a happy and healthy 7 year old.
     My second pregnancy went considerably better.  I found a great high-risk Dr.  My younger son was delivered ONE week early.  He is now in kindergarten and doing great. 
     In someways it was better to have my kids before MM.   I don't know if I could handle a pregnancy now.  (Plus-my hubby had a vasectomy)
     In my opinion, I would speak with your surgeon from Boston and see if they could recommend a specialist OB.
                               Best of luck,
                                Newt(Natalie)
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moyamoi
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Re: Pregnancy and MoyaMoya?
Reply #3 - Dec 3rd, 2007 at 12:38am
 
Hi Holly,
Yes I had a child after I had surgery! Yes, I was also scared but I had a wonderful team of specialists monitoring my every move. My ob gyn had never heard of MM but she educated herself about it and consulted constantly with my neurosurgeon and neurologist. I had my anaesthetist who did my brain surgeries to deliver my baby and was also under the care of a high risk doctor. Everything was fine and I had a caesarean at 36 weeks. I cannot comment on the EDAS procedure as I don't know how successful they are and I opted for the STA-MCA bypass that delivered immediate blood flow to my brain.
Chad is now 4 and a half and is the sunshine of our lives!! I have an older 12 year old as well and I don't know for sure but I could have had MM at the time that I was having him except that I didn't know at the time and have never bothered to find out.

Moira
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MMnewtUt
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Re: Pregnancy and MoyaMoya?
Reply #4 - Dec 4th, 2007 at 9:04pm
 
Hey Moira,
     Where your son was 36 weeks gestation-What was his birth weight?  Did he stay in a neonatal ICU or anything like that?
                                 Newt(Natalie)
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moyamoi
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Re: Pregnancy and MoyaMoya?
Reply #5 - Dec 5th, 2007 at 8:59pm
 
No he was not put into a neonatal unit - he was healthy and fine - birthweight was 3180grams - around 7lbs or thereabouts. I was monitored closely right throughout the pregnancy so I was told it was perfectly safe to have a child delivered up to six weeks premature.
moira
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MMnewtUt
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Salt Lake, USA, usa, 129, 143, UT, Utah
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Re: Pregnancy and MoyaMoya?
Reply #6 - Dec 5th, 2007 at 9:36pm
 
Moira,
     It is nice that Chad was so big.  My first son was roughly 1300 grams or 2 pounds and 2 ounces.  My second boy was 5 and a half pounds.  I felt lucky to make it to 35 weeks for my second pregnancy. 
                               Natalie
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givin.to.fly
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Hello!

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fargo, USA, usa, 275, 63, ND, North_Dakota
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Re: Pregnancy and MoyaMoya?
Reply #7 - Dec 5th, 2007 at 10:06pm
 
Hello All!

Thank you so much for all of your replies!  Your all so kind to offer up help. 

Anyway I saw a perinatologist today that thinks I should be alright to carry and delivery my baby.  He said that I need to be monitored carefully by my OB  and make a few more trips to St. Cloud to see him.  He explained my risks and said that the pregnancy should not improve or worsen my MM but that I am at a higher risk to have a stroke just because I've had them in the past and because I have MM.  He also said that I am at a higher risk to develop pre-eclampsia but that we would deal with that when/if it happened.  And that my blood pressure needs to be monitored closely but it should be fine. He also said that I'm at the perfect age to have this baby and am relatively healthy otherwise but we just need to be careful. 

He said that I shouldn't worry about the baby as the baby should be just fine but that we just need to watch me.  So I'm glad that everything should be fine with the baby but I'm still scared and worried (I'm a natural worrier though!) But I guess we will just see.  I am going to call the dr that did my surgery however and see if they can recommend a specialist, can't hurt to get a couple of opinions right?

But again thank you all for all your replies, they give me hope that I could have my baby and be just fine with good care.  And I'm so happy that all of your children are healthy! 

Oh and not to upset anyone but is MM genetic or familial?  Because I'm having trouble finding that out?       Smiley
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moyamoi
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Re: Pregnancy and MoyaMoya?
Reply #8 - Dec 7th, 2007 at 12:09am
 
Hey Holly, Everything will be fine - don't worry!
Just listen to your body and act accordingly. Your specialists should do the right thing by monitoring you closely.
Natalie, I wouldn't call Chad a big baby - over here in Australia he is a normal size!! 10 pounds is a big baby not 7 pounds!
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Stacieb
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Re: Pregnancy and MoyaMoya?
Reply #9 - Sep 21st, 2016 at 9:24pm
 
Hi Holly,

I know this is an old post. I am going through and trying to learn as much as I can through other mom's.  I was diagnosed in 1997 at the age of 11 with MM have had 4 surgeries (97, 98, 02x2) and am 30 and pregnant.  I am 31w4d.  I have been healthy and symptom free since my last surgery in 2002.  I was seeing a pediatric Neurologist/Neurosurgeon and didn't have an established neurologist when finding out I was pregnant. (My surgeon is in Boston - I live in California)
I have been to three neurologist since finding out i am pregnant and see a high risk doctor.  I still feel somewhat uncomfortable with the care I am being given since my OB doesn't know about MM and the neurologist don't know about pregnancy.
I have been told I can have a natural child birth, to monitor my blood pressure and to stay hydrated. I want to be 100% confident in going into a natural child birth without risking my health. 
What was your method of delivery? Have you corresponded with anyone that has successfully delivered a baby naturally if you ended up having a c-section?
Thank you in advance for your response.
Stacie
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Eloh
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Re: Pregnancy and MoyaMoya?
Reply #10 - Sep 24th, 2016 at 12:34am
 
Stacie-
Congrats on your pregnancy! I was diagnosed with Moyamoya this past May one week after delivering my first baby. I was hospitalized for a stroke and TIAs for three weeks leading up to delivery and was put on a heparin drip. I had blood clots in my jugular veins, so the assumption was that they had caused the strokes. My OB team determined that the best course of action would be to administer an early epidural, let the baby descend on its own and do a vacuum assisted vaginal delivery. It just so happened that the vacuum didn't work on its own and I had to push anyway. Because I had been on heparin for so long, they thought a c-section would be more risky than the pressure on my brain from pushing. With the help of an episiotomy, lots of mineral oil, and like 9 doctors and nurses cheering me on, I was able to deliver my baby just fine! This was while having symptoms, before any surgeries, and a week before my official diagnoses. I think with your experience with MM and your knowledge of the disease, as long as you are working with an OB who speacializes in high-risk pregnancies you should be fine. Since you live in California, it wouldn't hurt to reach out to Dr. Steinberg's office at Stanford. They are very friendly and very familiar with MM and I'm sure they can give you all the answers you need. I'm actually flying out there (from Boston!) next week for my first surgery. Good luck with your pregnancy and take care!
- E
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