In Sept 2009 I suffered temporary vision loss in one eye. An MRI discovered that I had narrowing of both my carotid arteries. They put me on 81mg of baby aspirin and sent me on my way. By March of 2010 I suffered a TIA. After an MRI and an angiogram  it was discovered that I had 90% occlusion on my right artery and 70% occlusion on my left artery.  They performed a procedure by inserting a stent via a tube through my groin. They successfully was able to repair my left side with the stent but my right side was unrepairable.  They have since added an anticholesterol medication daily. My neurologist assured me that the left was providing enough blood flow to both sides of my brain.  It still makes me feel a little uneasy knowing only one side of my carotid is functioning.

Prior to this  condition I was a healthy 37 year old woman with no risk factors. Since the carotid stent placement I have had no complications and feel great.  It's been a year now and my husband and I would like to have our second child. My neurologist could not guarantee a safe pregnancy because he said it's rare in my age group. I told him I was trying to do some research online and he suggested I research Moyamoya and pregnancy since he referred to my condition as "Moyamoya like".  In his opinion I already have one child so why take the risk.  However, I desperately want to conceive but not at the risk of loosing my life and not being able to raise my 6 year old. He said if I did decide to go through with it I should have a c-section to avoid the strain of labor.  I have since met with a maternal fetal high risk obstetrician who went over all my options and informed me that I would be at very high risk however it was not impossible. She assured me that if I do decide to conceive,  I would be closely monitored and working as a team with my neurologist, maternal fetal HR Obstetrician, and an anesthesiologist.  I believe I would be in good hands since I'm at a top hospital in Boston but I can't make a decision because I feel like I'm not educated enough about what's really going on with me.  She told me the risk is another stroke which could be worse or I can go into premature labor. I do realize she has to protect herself and cover all her bases by providing me with the worst case scenarios. I was afraid after I left her office but as weird as it sounds I still want to try.  A part of me really believes my baby and I will be safe.  I"m not sure if it's my desperation talking here but I need someone to either knock some sense into me or tell me that they've been through it and everything will be all right.  Has anyone on here been in a similar situation?  I'm desperate for some help and I really don't know where else to turn.  I'd like to do this now before I get any older which will increase my risk even more.  Please help.  :-[

nekarama,
Welcome to the family. First off are you seeing a MoyaMoya (MM) specialist. I have MM like symptoms too and I still saw a specialist. I am going to be 30 this year. Up to the stroke I had no prior signs that there was anything wrong with me. Once I was diagnosed with MM I started to see a MM specialist. I was told when I get pregnant that my neurologist would work with my OBGYN and see about if a nature birth is possible. There are many others on this site that have had natural births and they have full MM.

I would definitely see about changing your neurologist to a MM specialist so it can be determined what kind of surgery you should have. Not to sound scary but surgery is the best "cure" to help get more blood flow to the MM areas to prevent any future strokes. Since you live in Boston; there are great doctors there but I believe the lead MM specialist only sees children, but i am sure he can recommend an adult specialist.

I hope this helps,
Stay strong and ask any more questions you need.
Becky

Hi Becky
Thank you so much for responding!  I was so relieved to see at least one response. Since I posted on Friday I have been in touch with Dr Michael Scott who is a MM specialist at the Children's hospital here in Boston that everyone has boasted about.   He's already been in touch with me personally!  We are exchanging email presently.  I'm hoping he can steer me in the right direction.   I was never diagnosed with moyamoya and was previously a healthy 37 year old.  The doctors were all dumb founded how this happened at my age.  When I asked him about pregnancy he told me I can research moyamoya and pregnancy since my condition is very similar. However, I'm not sure if that’s the right thing to do.   I just wish I had better guidance so I can make an educated decision and feel comfortable with it.  Well, let's see what Dr Scott has to say.  I’m so nervous.  I want a baby so bad but not at the risk of loosing my life.  I have a 6 year old I want to be here to watch him grow up.  This seems like such a scary disease.  You don't realize how fortunate you are for always being healthy until it is taken away from you.   When were you diagnosed?  Have you ever suffered a stroke?

nekarama,
I am happy to her Dr.Scott is helping you out. Since you already have had a child, I would think any new babies you would have a symilar experience. MM is a progressive disorder where a few of us (myself included) don't present MM characteristices untill we are older.

I had my only stroke when I was 22. I was misdiagnosed like alot of us are so my diagnosis was not untill I turned 23 as a birthday present. I was on the blood thinner Cumidan(SP?) so i had to wait to have my surgery untill the blood thinner was out of my system. My nurologest wanted to operate right away but the blood thinner had to be out of my system and he felt I would be ok as it naturaly went out of my system.

I work full time and I am a part time Student finishing up my Batchlers in Electrical Engineering to pair with my Associates degree in Semiconductors. We want to have children so bad but School first then children. So I have asked all the same questions as you are. In my case which will be different then yours, I can wait and see if a natural birth is possible since I have never had a child. If it seems like I can't handel it I then could go into the c-section. Or we could just plan on a c-section to begine with.

My advise is have your OBGYN resurch MM with you and write down any questions you might have. Have you set your surgery date yet? What type of surgery are they doing STA-MCA or EMS or EDS?

Hope this helped,
Becky