Hello Everyone,
         Like "lotsofkids" I decided this is the place to post my hello, and my story. My name is Mike my "likewife's" is Julie, our 10 year old son is Robert, Julie has a 12 year old, " Brandon" that lives with us as well. We live in the rural Upper Pennisula of Michigan. I am a EMT-B for the volunteer ambulance corp here on our island in Chippewa County of about 1000 year round residents. About 4 1/2 years ago on a sunny spring sunday I was sitting watching a movie with my son. I glanced over at him and was startled, by a vacant stare, pale complexion, and slack jaw. I asked him what was a matter his response sounded somewhere along the lines of " HIBBA HIMMA JIMMA"  which startled him and he started crying. I asked him if he felt sick he shook his head yes, I wisked him off to the bathroom but he didnt vomit. I asked him if he was thirsty. he shook his head yes. I got him a drink, and poof my boy was back, could say his name, could say my name . could say the sky is blue on Drummond Island. I said lets relax and read a book, he said ok. about fifteen minutes into the book I look over to see the vacant eyes slack jaw and paleness again. I asked him to say his name and he stuttered his why through it ryhming his middle name with a last name of origins I did not know. I called Julie at work and told her Robert needed to go to the Hospital(1 hour away) and that I was calling the ambulance. Upon her arrival home Robert was having trouble walking and had a facial droop on the right side. but his speech was back to normal although he was sluggish to answer questions. The ambulance arrived and I carried him out and told my co- workers that it looked like TIA's and I was riding up front(standard EMT practice dont treat if you are to close). we arrived at the hospital they did a CT found no abnormalies "loaded" with dilatin called it a sezuire and made a referral to a specialist in Marquette. Who took no insurance wanted $10,000.00 as a retainer I guess and I could bill my insurance as we rolled along. That wasnt working for me. I spoke with our DR. who when I said it looked like TIA"S asked "do you even know what a TIA is?". Anyhow she made a refferal to U of M Ann Arbor after a week of the red Tape I emailed a DR. I had sat next to in a recent continuing ed class on of all subjects "strokes" who happened to be head of Emergency medicine at U of M and had a appointment for a week later the one day appointment turned in to a 3 day when Robert had a full blown spell in his office and they did a battery of tests including MRI MRA CT Brain waves ETC. All came back negative and we were on our Six hour trip home with robert diagnoised with complicated Migranes. We got home and theres a Message from our Dr. asking us to call him. We did he said a student had noticed a slight bulge in the communicating artery between the two major  arteries in the Bundle of willis new diganosis of Brain anyerism causing Complicated Migranes. 3 months later  we are back because the medicines nopt working but oxygen is
I had been keeping a log had bought a spo2 monitor and a BP cuff  and had noticed that when Robert complained of a head ache and stomach his bp was high like 150/90 his o2 was down lowest was 92  and his Hreat rate was elevated to about 120 I would put him on o2 for about 5 minutes and Vitals would be normal  and head ache and stomach ache would be gone. As I told the Dr. then, I dont know if I am stopping the full blown spells but he hasnt had one and i dont dont care if he ever does. He agreed and wrote me a RX for the prescription. They had us working with different medicines including topomax, dilatin and another of the max family. But they werent for Robert they left him so letharic, he was falling asleep in class.
We continued with the appointments as well as mri's to see if the anyerisum was getting bigger until last year when we decided to get a second opinion from Devos medical center in Grand Rapids we jumped through all the hoops  got the appointment and went he was leaning towards  Migranes as well and after 2 visits thought he should do A MRI MRA and a angiogram of his own to see. We got the results yesterday, His opinion is the anyerism is not a anyerism rather thats a section of normal sized artery between two constricted arteries......DX MOYA MOYA.....my response (DJ no Joke) what the hell is MOYA MOYA........sorry so long but had to get this out there and who better to tell then my new family of Moya Moya survivors and challengers. Any way expecting to hear from a neurovascular surgeon tomorrow on a consultation, he has done 1 surgery for moya moya, gonna look around before we decide...who does it. We will be looking at the U of M doctor as well, based upon your web page, he gets high reveiws

Thanks for hanging in there with me,
Mike

P.S. D.J,  as Robert would say You Rock Duuuuuude

Hi Mike, Welcome to our MM family!

I cried reading your story. It just breaks my heart, but the good news is that he was finally diagnosed correctly before a major stroke. Prompt diagnoses and management is so important. I can’t emphasize enough how important it is to learn all you can about this disease, it’ll help you make informative decisions down the road. Unfortunately we see all too often inexperienced doctors handle MM cases. The other thing I’d like to mention is what I believe to be the most vital part, and that is getting a doctor who has experience with MMD.

If you have any questions, big or small or if we can help you in any way, please don’t hesitate to ask. You all are in my thoughts and prayers.

Mar

Islandentity,

I'm so sorry to hear that your son has mm, but I am happy to hear of your tenatious pursuit of solving your son's health.

If we are not aggressive.....the health system can let us fall through the cracks. I was 5 yrs going to docs! It took a heart surgery resulting with 2 mini strokes to get the doctors mobilized and finally solve the mystery!  

Today, I fed-ex'd my angiogram, ct, mri, mra and nuclear spect films to Dr Steinburg at Stanford. I am thrilled that he will give an opinion in my case. They were extremely helpful. When I contacted them....within hours they returned my call and asked me to send my films.

I suggest that you do the same, both Dr Steinburg of Stanford and Dr Scott of Children's in Boston are the two leaders that have a special interest in moyamoya. Each has been following mm for over 20 years.

Dr Steinburg has done over 350 surgeries, while Dr Scott has close to 250 surgeries. Dr scott lists on his website 208 surgeries from 1985 - 2005

Dr Scott is primarily practicing on children with mm.

Finding this site has been a wealth of solid information and very encouraging to see there is "life after moyamoya" (ya just have to know what you have in order to fight it)

do keep us posted.....I'll be following your journey.

warm wishes and good health to all your family,

diane : )


I would contact the both of them!

Island....

I posted a "visual" for you on the"Split Personality / Adult ADD" thread.....I couldn't resist!

smiles....diane : )