Hi Sharon,

Welcome to the MM family.

I'm sorry to hear your daughter is having difficulties and that it might possibly be MMD.

You have come to the right place for information. In fact, Discovery Health Channel just aired a segment on MMD with Daphne. Her mother is jenny and she has posted on this board. Look for the Discovery Channel posts by DJ under MM related info. He provided a link to the airing of Daphne's story.

Additionally, there are other folks on the board with children ranging in age from infants to teens. You will probably hear from one of them. There is a lot of MM information on the board. Look under the medical information at the top. There is also a link to a MM video on the first page.

I don't have a child with MMD. I take care of a brother who has MMD and had surgery in May of 2005. He is 48 so I can't speak to the cognitive decline as it relates to a child. Like I mentioned, some of the others with children will most likely see your post and respond.

I wanted to acknowledge your post and welcome you to the family.

Lore

Hi Sharon,

Welcome to our moyamoya family. I’m so sorry to hear that your daughter may have moyamoya. You just brought back a memory of myself when I first heard the words moyamoya. I contacted DJ, and I think I said, “someone please help me!” So I sure do understand, we all do. Everyone here has been through what you’re feeling and had the same questions, and we’re here to help you in anyway we can.

First, you’re right to learn all you can about this disease. It’ll help you make informative decisions along the way. That’s so important!! This is a rare disease, and not many doctors know about it, let alone have experience with it, so you need to know all you can about it, so they can’t steer you in the wrong direction, as we see all too often. Which leads me to another very important factor, if not the most important, and that’s choosing a doctor with experience, and hopefully, a MM specialist if at all possible. There are so many factors involved with MMD, and a neurosurgeon with experience is imperative, IMO. Unfortunately, there are only but a few MM experts, who deal with MM on a daily basis, to choose from. The two that have the most experience, IMO are, Dr. Scott, at Children’s Hospital in Boston and Dr. Steinberg, Stanford, CA. When your daughter’s diagnosis is confirmed, you should get a second opinion from the best. You can overnight copies of the MRI/MRA and Angiogram (the definitive test to confirm MM) to an expert ASAP. For example, Dr. Steinberg, who saved my niece’s life, got back to us within hours of receiving the films with his expert opinion, at no cost. It saved her life, because the doctors here wanted to wait.

See, MMD is a narrowing of the arteries to the brain, which robs the brain of the vital blood and oxygen it so desperately needs. Your brain makes up for it, and grows new vessels (collaterals) to try and give the brain the nutrients it needs, but these new (MM) vessels are abnormal and weak and can rupture at any given time and cause a stroke. There lies the danger, and the importance of an experienced doctor.

This is a lot for you to absorb all at once, I know, but thank God, there are answers for you and roads to take, and we’re here for you every step of the way. If you find this all over whelming, and would like someone to talk to, I would be happy to listen and help you in any way I can, as would many others here. They are wonderful people here, God love em! Just let us know or ask away. No question is too small. If you can't sleep, I'll give you my phone number in a private message or vice versa, just lemme know.

In the mean time, please know you and your daughter are in my thoughts and prayers.

Mar

Sharon,

If your daughter has MM -- you have definitely found the right place.  In some ways, I hope you have found the answer to your daughter's problems, because there is a solution.  And while it sounds scary as can be that your daughter needs brain surgery -- the surgery, performed by an expert, (we traveled from New Mexico to Boston to Dr. Scott -- WONDERFUL MAN!!!) does make a significant impact.  But in some ways, I hope MM is not the problem and hopefully there is a simpler solution. 

I am somewhat surprised to hear that she had a normal MRI.  After 6 years and what sounds like strokes, you would think it would show up on the MRI.  However, an MRA is helpful because it looks at the actual arteries affected by MM.  In my son's case, they were simply gone!

My son was diagnosed almost seven years ago and is a happy, healthy 13 year old.  It does need to be said that each individual experiences their own rate of healing.  Age, however, is -- to some extent -- on your daughter's side.  Adults have a harder time healing that children.  Infants & toddlers tend to heal better than teenagers.  It all boils down to the elasticity of the individual's brain.  What is true for one 11 year old will not necessarily be true for another. 

Please keep us posted.  This is a wonderful site with a wealth of information.  This site didn't exist 7 years ago -- and I simply talked to one or two parents of the pediatric stroke network.  And that was WAY more than my little town in rural New Mexico!!!

Good Luck!
Kim -- Matthew's Mom

Hello Sharon,

I only have a few because I have to get back to my wife.  You are on the absolute best site for information and support.  I can honostly say that this website saved my wife from having a stroke.  My doctors at first wanted to drag their feet about this disease but with the information and support from this site my wife is going to be cured from this disease really soon.  She is half way there now.  All I can say to you is get on the ball, never let a doctor drag their feet about anything, get in contact with Dr. Steinberg's office, and stay on here for support and information.  I was always told don't believe everything you read on the internet.  Well everything is TRUE on this website.  Thank you DJ.

Take care,

Jim Siemers

Dear Sharon -

Like the other have said, you are absolutely in the right place.  

My daughter Kate had problems for several years - headaches, tingling and numbness on one side, anxiety and problems focusing.  She had what the doctors said was a "normal" MRI, but we have since learned from Dr. Steinberg that it wasn't.  The MRA she finally had showd the MMD without a doubt.

Unfortunately, we believe that the doctors she had seen knew nothing about MMD and as a result, called her MRIs normal.  It wasn't until the disease had progressed so far and become prevalent on both sides of her brain that a doctor ordered an MRA and notified us that something very serious was wrong, but he didn't know what.  That is when we finally found Dr. Steinberg at this wonderful website of DJ's.  We sent him her films and he had us come right out to Stanford.

Kate had by-lateral direct bypass surgery at Stanford in September 2005.  She is doing extremely well now and is back in school (she is a junior at Oklahoma State U.  Her headaches are gone and her cognitive ability to focus is sharp as can be.  

Hope this helps.  Keep in touch with all of us.

Hugs,

Cass in Dallas, TX

IMO Sharon, I don’t think Dr. Scott would be uncomfortable at all. Pardon me for speaking for him, but I believe he would want what’s best for Rachel. With MMD, I’d bet he’s probably seen misdiagnosed or undiagnosed cases more than we’d like to think. MM is a rare disease; so most doctors never consider it or think to look for it, and I’m sure he knows that, whether it be a colleague from the same hospital or not.

To be perfectly honest with you, since I’ve heard the words moyamoya, I’ve seen some brilliant neurologists/neurosurgeons, don’t get me wrong, BUT… I’ve seen more pompous and arrogant ones, who are clueless when it comes to MMD even more. It upsets me to even think about it, so I better not get started on that. (Right Lore? You know!) But Dr. Scott’s a MM specialist and I’ve heard, a wonderful man, so not to worry there I think.

Also, please don’t worry about being a pest. Just keep at it, to keep the process moving to either diagnose it or rule it out. I don’t know Rachel’s specifics, so I don’t know the urgency of it all, but if you’re that concerned, and you’re not getting the attention you feel is needed from your neurologist, you could even take her to the Emergency room and insist on the tests necessary for a diagnosis, and get a copy to an expert ASAP. It’s just a thought... I’m not trying to alarm you, but rather, suggest a way to get some answers a bit faster if need be.

God bless ya, and get some sleep. My continued thoughts and prayers…

Mar

Thanks so much all.  (Sorry I haven't responded sooner...we had no power for two days and had to go to a hotel.  Our power came on two hours ago but our house is still freezing!)

My neurologist finally faxed the form requesting the MRA, so I'll call radiology in the morning and make sure they received it.  They were closed today.

I'll keep you all posted.  Thanks so much again.