Im not really sure what to write.  My name is Francis and I am 27 years old living in new jersey.   :-/I was taken to the hospital on March 27th because my left side went numb and I was throwing up.  Ended up staying in the hospital for 10 days in ICU with a drain in my head.  During that time they took CT scans and MRI's.  A neuroseurgeon said I may have MMD.  I will be seeing him on tuesday.  I believe he will be scheduling me for an angiogram when I see him.  I am still not fully grasping what had happened to me. :-[  My left side is still numb as well.  Is there anything I should be doing? 

A brain angiogram is the best diagnostic tool to determine if it is indeed moya moya. Keep calm. Do you know if you had a stroke, and if so whether it was hemorrhagic is ischemic?

Hi Francis, Welcome to our MM family!

I’m from the suburbs of Philly, I don’t know what part of Jersey you’re from, but we may be neighbors and I’d be happy to help you in any way I can.

My advice to you would be to learn all you can about MMD. There is a wealth of info here.

Mayham is right, the angio is the definitive diagnostic test for MMD. It’s the only test that can actually see all the tiny MM vessels. May I also suggest you request a copy of your angio ahead of time incase you are in fact diagnosed with this rare disease. If you do have MM, it’s very wise to send your films to a MM specialist for a second opinion to be sure you’re on the best possible path for your particular case.

If you arm yourself with knowledge and learn all you can about this disease, you will understand why you are experiencing the numbness, and the possible outcome without the proper treatment. Not only will you learn that this is a progressive disease but also that MM is considered a rare disease, so unfortunately many doctors aren’t as familiar or experienced with the best possible approach for successful treatment, so getting a neurosurgeon with REAL MM experience is also vital for success.

DJ has a thread above Diagnostic process and questions for surgeons:
http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1086889571
this may also be of some help to you if you’re diagnosed with MMD. It can be overwhelming at first and you can blank on what question to ask.

Drink plenty of water and stay hydrated, and watch taking any over the counter meds or other drugs until you know what’s going on. You do not want to be doing anything that could possibly help bring on a stroke.

If you have any questions, please feel free to ask, no question is too small.

You’ll be in my thoughts and prayers.

Mar

The docs did say it was hemorrhagic i believe.  I will be seeing the neurosurgeon later today.  Thank you for the info and the prayers.  This has especially been tough on my wife. 

Any updates from your Dr. visit yesterday? As far as MMD, this is a great site for not only information but support also. Hope everything went well yesterday and your doctors have a good grasp of what happened to you.

The doc referred me to a vascular neurosurgeon.  I will be seeing him in a couple of weeks.

Had my angiogram last week and saw the doc today.  He confirmed that I have moya moya. 

You have definately found the best place for support and information right here. I'm sure it probably hasn't even sunk in yet, but take the advise given on this site. Arm yourself with all the knowledge you can about this disease. MANY in med field have little or no knowledge of MM.
    We traveled to Boston from the suburbs of Philly for my daughters surgery. It is so important to find a specialist.
    So sorry you got this diagnosis, but with treatment you will be OK!
Pam

Francis,
Welcome to the family. If you have any questions, about anything Please feel free to ask. I was 22 when I was diagnosed. There is a great verity of ages and experiences on this sight so if I cant answer you question there is a pool of others who can help.

Keep a positive attitude and stay strong.
Becky

I got in touch with Dr. Steinberg's office and I will be sending him my test results to see what he thinks.  The doctor has said that he can do an EDAS procedure, but I want to be sure if I do surgery it will be the right choice. 

Francis,

Welcome to MM.com.  I don't post very often, but like others on this site, I'm not to far away from Jersey.  Lancaster PA now is home, and south Philly and Cherry Hill have been home as well!  Anyway, as many have already said, this forum is a great resource both medically and emotionally.  I had a stroke in September and was diagnosed with MM luckily right away.  Unluckily my neurologist discharged me the same day as my angio and told me to have a nice life and cross my fingers!  This is when I discovered MM.com.  I had both my direct bypasses done by Dr. Steinberg this January and returned to work in March.  I'm 32 and I thought my life was over when I got the news.  There are amazing Doctors on the east coast but in my opinion Stanford IS the leading authority.  Not only is Dr. Steinberg "the man" but his staff is just as excellent. Many doctors perform these surgeries not just for MMD but for other cranial/vascular issues.  Where Stanford and Dr. Steinberg rise above, is in the testing, bedside manor, and AFTERCARE.  You and I (and most of us on here) had a 1 in a million or so chance of this, and Stanford does 4-5 surgeries per week from around the globe. EVERYBODY in the clinic and the hospital are AMAZING.  Feel free to reach out anytime!!

Jason

Looks like I will be going to stanford next month to have the surgery done.  Both sides will be done and will be a direct bypass.  Anything good to do there?  I will be there for about a month.

Flee2000,

Good luck next month at Stanford.  You are going to a top notch place for your surgeries.  There are lots of things to do, it is Northern California and you will be just 30-45 minutes south of San Fransisco and the Golden Gate Bridge.  Keep in mind that you will be having 2 very BIG brain surgeries and your energy levels just after surgery will be low, don't over do.  I was there last year in April for my surgeries and was also there about 1 month.  Do you know where you are going to stay?  There are several people on this web page that live in the area.  We were able to get a hotel room with a small kitchen and refrigerator so we could cook in the room.  After surgery I was very tired and did not want to go out much at all for a few days plus it became very expensive to eat out all the time.  If you have any other specific questions just let us know.  Be sure to visit the beach when you are there, it is beautiful.  Also try to visit Fisherman's Wharf in San Fran.  It is really nice. 
Good luck and let us know your surgery dates when you get them.  I will keep you in my prayers.

Tracie

I am now in Stanford staying at the H.O.M.E apartments.  I already had the xenon gas ct, spect scan, and trans cranial Doppler.  Today is MRI and day two of the spect scan.  Everybody here has been wonderful.  I see Dr. Steinberg on Monday.  Surgery is set for the 11 and 18.  Thank you everyone for the support.  :)

The Xenon CT was my favorite test. Very happy that you're on your way, and wishing you a speedy recovery.