Hi

My research indicated that pregnancy and child birth after surgery is not a problem. PM me your email address and I'll send you some literature from Dr Steinberg; it's not much but it certainly affirms what I've said.

Moyamoya won't stop you from having babies.

Stay strong
Mark (Luca's Dad)

Little Luca wrote on Oct 8^th, 2009 at 2:36am:


It is NOT as cut and dry as the above post implies. MM can in fact have dangerous risks with pregnancy. Every case of MM is different with MANY concerns before you could possibly make that call. That's a call for an experienced MM physician who knows your particular case to say. I certainly understand why your Neuro may have suggested a danger with pregnancy. I’ve read where it is in fact very dangerous to get pregnant and deliver a baby with MMD if you haven’t had successful treatment, but with successful treatment (successful surgeries on both sides) many patients here have gotten pregnant and had babies and are doing wonderful. They did great because their pregnancy was monitored by MM experienced doctors AFTER their successful treatment. Most every MM patient I’ve ever spoken with though, said that C-Section had to be the method of delivery, as they won't allow any pressure on the brain as with a regular delivery. They also had to have a doctor that specializes in high-risk pregnancies, and one that’s familiar with MMD. There were also members here who said that anesthesia during their C-section was a very important concern (depends on your specific case) so the anesthesiologist should also be familiar with MMD, because certain anesthesia cannot be administered with anything that constricts the vessels or increases blood pressure like some do. Plus, they say your blood circulation increases normally with pregnancy, so having MMD; you can see the need of a “high-risk pregnancy physician” with these special concerns for special care to help avoid any chance of a possible risk of hemorrhage or stroke.

Please note, even though other MM patients had successful pregnancies after their surgery, it doesn’t necessarily mean it’s safe in your particular case. We don’t know your specifics, so we can't make that call. There could be additional concerns or other underlying problems we don’t know about in your case. For example, some MM patients are at a higher risk of forming a brain aneurysm. I’ve spoken to a few members here who could not get pregnant for that reason alone, while others had problems with their blood pressure and were advised against getting pregnant due to the dangers, so it’s not a cut and dry case of saying it’s safe for everyone. There are individual factors that should be taken into consideration and again, why we always advise an EXPERIENCED MM Neurosurgeon to say whether it’s safe in your case or not.

On another note… when you mentioned finding a good birth control, I hope you know that birth control pills are usually forbidden to a MM patient due to the dangerous risks.

I admire the fact that you are researching your questions. That’s very wise. Arming yourself with knowledge saves lives when dealing with a rare disease and when there is just such a huge lack of knowledge and understanding about this disease throughout most of the medical profession.

Good luck! You’ll be in my thoughts and prayers.

Mar

My ObGYN talked to my Neuro and said there was a low dose Progestergen Only pill. Then I was forgetting to take my pill when I went off a daily migrane supressent so I had an IUD put in. I may have to have a C-section when I get pregnet. My friend who does not have MM got the same IUD as I did and it took her 6 months after it was removed to get pregnet but my OBGyN said I should be able to get pregnet after my first period with it removed.
Hope this helps,
Becky

Its funny that "normal" non MM people do not understand the challenge. They tell you just to take birth control pills and you explain that you can not and they do not understand why!

I was taking the low dose (Mirconor). Its the safest birth control PILL option for MM but still not a good option of birth control, so I chose the IUD. Yes, my husband and I do want to have children down the road.

Its frustating that since MM is so rare, there is not much research or anything showing exactly what you need to do or how to handle a MM pregnancy, which I can only assume would be pretty "high risk".

A woman I know with MM who used to post on here had one baby before she was diagnosed (by c-section luckily for other reasons) and then a couple of years after her surgeries she had another beautiful baby, by c-section again and with the aid of a high-risk pregnancy team.. She had no problems at all..

Admittedly when I was diagnosed and had my surgeries (woah 4 years ago!!) having children was the last thing on my mind but it certainly is up there at the moment. On the cards soon hopefully!

I thought I would post my experience on here. I have had two children prior to the diagnosis of MMD. Looking back at medical records I indeed had MMD prior to both pregnancies it was just not diagnosed. My children are almost 5 and 3. I however had them both c-section because the neuro I was seeing at the time thought I had an aneurysm. As others have said each case of MMD is different and the decision and the care of pregnancy is different. My body made it through both pregnancies just fine however. I'm undecided on whether I want any future children but will leave that option open. My surgery was in 2/2008. I hope sharing this helps some.