Hi Missy,

I want to say congratulations, but also how concerned I am. Am I correct in assuming from your post that you did not have any treatment, meaning any surgery for your MM??? If you haven't, I gotta tell ya first off, MM is a progressive disease. Things don't stay as they are, this disease gets worse over time. You don’t necessarily have to have any symptoms when it progresses. The progression is different from patient to patient, but bottom line, left untreated, afflicted patients will have strokes, which may be debilitating and eventually fatal. With MMD, we know a stroke/hemorrhage is coming, we just don’t know when, but the good news is, this disease can be successfully treated to prevent that possible stroke.
 
As far as MM and your pregnancy, I’ve read where it is in fact dangerous to get pregnant and have a baby IF you haven’t had successful treatment, (surgery) BUT with treatment many here have gotten pregnant and safely had babies. They did great when their pregnancy was monitored by MM experienced doctors and staff, but AFTER they had successful treatment! In most cases, every pregnant MM patient I’ve ever spoken with said that C-Section had to be the method of delivery though, as they won't allow any pressure on the brain as with regular delivery. There are doctors that specialize in “high-risk pregnancies” and that is what MM patients’ should have, and one that’s familiar with MMD. There were also many members who said that administering the anesthesia during the C-section was very important (vital) for a MM patient, 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 very sensitive to anesthesia. They say your blood circulation increases with a normal pregnancy, so having MMD; you can see the need of a “high-risk pregnancy doctor” and MM experience, for special care to help avoid any chance of a possible hemorrhage or stroke.

I would NEVER advise anyone to have an abortion, but rather advise you to seek a “MM expert” for their opinion, ASAP. They would best know from experience and after learning your specific situation as to whether delivery is safe in your case.

That's my

You'll certainly be in my thoughts and prayers.

Mar

Thank you for your advice everyone. I haven't ever had surgery for my moya moya but they do monitor me every six months by doing a cat scan they said I only have a very small blockage and that the moya moya is not progressing. I do have two other children wich I probably had moya moya when I had them and I had to have c-sections with them its just that i'm very worried about what can happen.  If anyone knows of any o.b.'s that specialize in moya moya around the kansas city area please let me know and thanks again for all your help.

 Thanks Mar for all of your help. I am so very confused about what to do I don't want to have an abortion but if I can't have this baby safely without the risk of death or major stroke than I would rather not do it at all because I do have two other children that I have to think about.  I am so scared something serious is going to happen. I just don't know what to do.   

What I can't understand is you haven't been too concerned about having MM but this concern has only surfaced since you have become pregnant. I think that once someone finds out that they have MM and do nothing about it, this is just sheer irresponsibility especially as everyone knows that this is a progressive disease. You may be stable and not progressing, but no one can tell you that that is how it will always be. You should have been taking precautions if you were so worried about having another baby in your present  "no surgery" condition. Now you are faced with a decision that you are finding hard to come to a satisfactory conclusion about, but this should have been thought about in depth once you found out you have MM.
Surgery is the only way that you can avoid a major catastrophe happening to you and everything should have been done to make sure that you are still around for your other children. If this had have been properly thought out you would not be in the position you are in today and an innocent life would not have to be put at risk through sheer irresponsibility. If you are under the care of a neurologist who has MM experience, you should well and truly have been informed that the road that you are taking by having no surgery is going to end up tragically in some way for you. I call things as I see it - don't believe in beating around the bush and anyone who lives with the knowledge that they have MM and choose to do nothing about it, are absolutely insane.

Hi Missy, I'm sorry that you have to face a hard decision, personal, I don't trust CT scan because it always show my brain is normal eventhought my left side arteries is totally close and the right side is partial close, my neuro have to order MRI,MRA and angioram.  If I was you I will ask for those test to be done and search for an expert MM doctor to ask for his/her opinion.  I'm with Mar of everything she said. It just my 1 cent.


Take care of yourself and keep us post.
Kieu