Thank you DJ for welcoming us into your group.  Our daughter, Jennifer (2 yrs) was diagnosed with MM a few weeks ago.  She also has optic nerve coloboma and morning glory syndrome.  Due to these two conditions she is visually impaired. I have to add that she is an amazing little girl who will melt your heart in an instant.  She has had an MRI and MRA. Her neurologist (Dr. Freidman) wants to wait six months to do another MRI/MRA. He wants to see if the blood vessels get worse. He said there is quite a bit of narrowing especially on the left side.  Of course, I'm worried.  My husband says Dr. Freidman knows what he's doing.  I also respect Dr. Freidman, but I want to get a second opinion.  We live in Cleveland, Ohio.  I was going to email both Dr. Steinberg and Dr. Scott for a second opinion.   I guess I need some support from those who have been through this.  Am I overreacting? Dr. Freidman says he has experience with MM (he is not a surgeon though). This is all so overwhelming.
Thank you so much.
Michelle

[smiley=hug.gif]            [smiley=hug.gif] [smiley=hug.gif]      [smiley=hug.gif]      

Although I myself do not suffer from moyamoya, my husband DJ does.  I can't even imagine what you are going through, my thoughts and prayers are with you.

If you have questions, feel free to ask them here, members will give the best advice possible.  

May God be with you, and your family.

[smiley=hug.gif]

Steph

Dear Michelle,

Welcome to our family!  I am sorry about your daughter's diagnosis, but very glad you've found your way here!  This is a great place to learn about MM, and there are some wonderful people here, all who have traveled this road in one way or another.  
 
I am the mom of a 19 year old girl who was diagnosed and had two bypass surgeries in May/June 2004.  We consider ourselves very fortunate that our daughter had had "only" two small strokes prior to surgical treatment.  
 
The best thing you can do for Jennifer is to read up and educate yourself about this disease.  As you become more familiar, you will understand that this is not a "wait and see" disease.  It is progressive, and ideally surgical treatment is obtained PRIOR to the damage that may be caused by a devastating stroke or hemorrhage.  
 
I don't know the details of Jennifer's history, and I am definitely not a medical professional.  I want to caution you though, that a "wait an see" attitude from a doctor is usually something to question.    
 
Unfortunately, the majority of the medical profession is just not well educated about MM.  The wait and see stance is not uncommon.  The question you have to ask is, what are they waiting for?  This is a progressive disease that won't get better or improve with medicinal treatment.  The true experts, doctors who see it on a DAILY basis, are few and far between.  The leading specialists are located at Boston Children's (Dr. Michael Scott) and Stanford (Dr. Gary Steinberg).   Dr. Steinberg operates on both children and adults, and Dr. Scott primarily sees pediatric patients.  Both are happy to offer an opinion.  You might want to seriously consider sending your daughter's test results to one of them for a recommendation.  
 
I don't want to frighten you, but as a mom, I'm sure you don't want someone who just dabbles with this disease to treat your daughter.  With the lack of MM knowledge amongst the medical profession, it is not unusual for people to have to travel away from home to seek good medical care for this disease.  I've met many people from out-of-state and out of the country who have come here (California) for treatment by Dr. Steinberg at Stanford.  It is commonplace - several hundred surgeries (amazing when you consider that MM supposedly occurs in 1 in every 2,000,000 people!).  Dr. Scott also treats many patients from all over.

To be fair, I must say that I now work for Dr. Steinberg at Stanford.  After going through my daughter's surgeries, recovery, and then (on a volunteer basis) becoming very involved in supporting MM patients coming here from out of town, my job with them just kind of evolved.  Suffice it to say that I was so impressed with the program, becoming part of it seemed exactly what I was meant to do.  From a personal perspective, Dr. Steinberg is definitely my hero!  
 
Good luck to you as you continue the education process.  You and Jennifer will be added to my prayers.  Please don't hesitate to continue asking questions, and I hope you can decide on a plan of action that seems to best suit your precious little girl.

Warmly,
Jill  

Hello.I am sorry to hear about your daughter.My 4 year old daughter,Paige also has MM and she has neurofibromatosis.I know exactly how you feel about getting a second opinion.The surgeon we were referred to wanted to wait until her condition worsened.Thankfully,I got a second and third opinion.Both recommended surgery and surgery is finally being scheduled for her.I am so thankful that we did not take the first surgeon's advice because he wanted to wait until August for her to have another MRI.She had one last week at another hospital and it showed that her condition had already gotten worse.I don't even want to think about what might have happened to her if I hadn't pursued getting that second opinion.One thing I can tell you from experience is to trust your instincts where your daughter is concerned.You know her better than any doctor.Also do all the research you can about MM so you can make the best decision for your daughter.Your daughter & family will be in our prayers and we wish you the best.

Jennifer

Hi Michelle, [smiley=wave.gif] Welcome to our MM family!

I’m so sorry to hear your daughter has MMD, but thank God she was diagnosed before a major stroke, many are not as fortunate. You are NOT over reacting IMO! You are very wise NOT to go the “wait and see” route. My advice is always to get a second opinion from a MM specialist first, one who deals with this RARE disease on a daily basis and can base your child’s case on experience. The facts are, MMD is progressive, and NO MEDICATIONS can prevent the narrowing of the arteries from progressing or keep MM vessels from developing, and there lies the danger of waiting. Unfortunately I’ve seen the consequences of waiting, and it’s not worth the risk IMO. If Jennifer has quite a bit of narrowing, why wait for the brain to get less of the blood/oxygen and nutrients it needs, or wait for a weak and fragile MM vessel to rupture and bleed. I never understood that philosophy. I do not know Jennifer’s specifics and I’m certainly not a doctor, I’m simply saying, that IMO, I would want a MM specialist to say one way or the other if waiting is safe.

My niece had some of the best doctors in the country at the University of Penna., excellent neurosurgeons’, but as far as MMD goes, they too had the “wait and see” philosophy and my niece had 4 devastating strokes. She was in a coma, paralyzed and on a feeding tube. It isn’t that you don’t have an excellent doctor Michelle, it’s that many doctors just don’t have the experience dealing with this rare disease. There are so many different factors to consider. At what stage is the disease? What surgery would best suit her individual case with her other specifics involved? I could go on & on where a specialist is so vital, that’s why we always advise a second opinion from the best with this disease. In our case, we simply over-nighted my niece’s films to Dr. Steinberg and he called us immediately and said she needed the “direct” surgery, no time to wait for new vessels to grow with the “indirect” surgery. He saved her life.

Each case of MM is different because of the many individual factors involved, but surgery is usually the only way to manage this disease and it’s extremely successful with an MM specialist.

Please keep us posted. I want you to know that your daughter will be in my thoughts and prayers.

Mar

Welcome to the Group but it is unfortunate how you got here.  Our daughter Allyson is 15 months and was diagnosed with moya moya last November.  We were very fortunate to be diagnosed so early but we were told to hold off as it wasn't severe.  Not knowing much about the disease and this coming from a doctor I figured he knew best.  When we went in February for a follow up MRI/MRA we found that it had progressed and it was on both sides.  I immediately sent tests to both Dr. Steinberg and Dr. Scott.  We got immediate responses from both.  They both told us that she was a candidate for surgery.  We had to make the decision as to who we wanted to go to.  We decided to go with Dr. Scott as he deals with nothing but pediatrics and it would have been in a childrens hospital.  I am definitely glad with our decision.  Her surgery was scheduled for March and they were so helpful.  He is very good at explaining what he is going to be doing and has a great bedside manner.  Everything that he said was going to happen, happened.  We also liked that he does both sides at one time.  He is amazing.  He has a great team and to this day we still get calls from him to see how Ally is doing.  Coming from parents that waited because we didn't know I would definitely recommend that you don't wait.  I know it is very hard.  If you ever need to talk or need anything please email me.  Best of luck and our thoughts and prayers are with you.  

Jamie and Aaron

Hi Michelle,

I too want to welcome you to the MM family.

I really can't add much to the great advice you have already received from Jill and Mar and the others but I can share my brother's story and tell you we too are from Ohio. We live about 125 miles south of Cleveland and around 20 miles north of Columbus.

My brother Kevin (Cubbie) had a significant stroke about 5 years ago. He went misdiagnosed and undiagnosed until 2004. I searched and searched for a doctor who could even diagnose Kevin and then find a doctor familiar with MM once diagnosed. I was unsuccesful until I found this site and Dr. Steinberg. All doctors in this area were unfamiliar with MM and sent Kevin home "to live out whatever life he had left". Those were the doctors exact words. Imagine that!?

I sent Dr. Steinberg Kevin's films and received a quick reply. Kevin also had a dissected carotid artery caused by MM. The other artery was over 90% blocked and Kevin was getting worse by the minute. His skin was gray and his balance was way off. To make a long story short, Dr. Steinberg performed two STA-MCA surgeries  on Kevin in May of 2005. Keep in mind, every MM case is different. There are diffierent surgeries depending on the individual circumstances. Kevin just returned from Stanford for his one year follow up and he is doing very well. In fact, so well, that even Dr. Steinberg was amazed at Kevin's 360 degree turn around. Although Kevin is an adult, the point I'm trying to make is pretty much what everyone else has said and that is MM is nothing to mess around with. I too have wondered what "wait and see" is about. Clearly, to "wait and see" equates to continued progression of the disease and stroke or hemorrage. Ridiculous!........especially when it can be avoided. That's why it is important to consult a MM specialist. Without surgical intervention by the hands of a skilled surgeon who has spent decades treating MM, it goes without saying that Kevin would most likely not be here.

The difference in a doctor familiar with MM versus a doctor who is not, can very easily be the difference between life and death or if life, the quality of life. I am still in awe of Kevin's restoration of not only his health but his speech and thinking ability since Dr. Steinberg operated on Kevin. Laying all jokes aside, blood flow does wonders for the brain.

In addition to having a MM specialist, IMO it's important to have the entire MM team from the nurses to the anesthesiologist and everything in between. The one thing about Stanford is they have MM down to a science. Because of their expertise in MM, everything falls into place like clockwork. Amazing!

The one thing Kevin wants is to "save the children" from the devastating consequences of untreated and undiagnosed MM. In retrospect, it is very clear that Kevin had signs of MM several years prior to his first stroke. I feel alot could have been avoided in those earlier years had Kevin had a doctor familiar with MM.

Michelle, you are not over reacting. You are a concerned mother and Jennifer is your precious child. You are her mother and from a mother's perspective, nothing comes between a mother and her child.

Our MM experience was a long and devastating journey until we met Dr. Steinberg and the entire Stanford MM team. IMO, untreated MM is not worth the possible devastating consequences.

If there is anything I can do for you or Jennifer, please don't hesitate to contact me.

I will keep you and Jennifer in my thoughts and prayers.

Hugs,

Lore