Hello all!
  I recently sign in on the guest book with the following information about myself:  

"I have recently (Mar 19) been diagnosed with Moyamoya disease. I am asymptomatic except for migraines, and the preliminary diagnosis is based on an MRI/MRA. MRI was normal but the MRA showed blockage of the left carotid artery. I'm female, 45 and half Japanese. The neurosurgeon said since I have no other symptoms (no hemorrhaging or mini strokes) and that my brain developed collateral vascular flow that's compensated for the existing blockage, he indicated that no treatment was required. My question is, how progressive is this disease? Is it possible that I will be so lucky as to have no further problems?"  
  Since then what I have learned from the internet as well as from this sight and from several members of this sight (Thank you all) has been informative but very overwhelming, and I am striving to filter through it all.  
  I saw my regular Dr this morning and she confirmed what I have gathered on my own.  And thankfully, despite the neurosurgeon's indication of NO TREATMENT, she DOES NOT want to take a 'wait and see' attitude.    Even before I left her office her staff was calling out to Stanford for Dr. Steinberg and have since sent him my records/reports for a second/EXPERT opinion.  
  Well I'm still overwhelmed since all of this has happened in less then one month.  And I'm sure this will be an ongoing saga....  

  Thanks DJ for creating this great sight and to all of you for giving me the feeling that I am not alone in all this.  

Carol

Hey Carol,
I'm with Sue on this one. Although it is difficult to know how every person will react to MM as we are all different, do you really want to chance it that something may not happen? I would not be prepared to take that kind of risk with my life personally. It is a progressive disease and the arteries that develop so that we with MM can function are not as strong as the normal arteries that are supposed to be there, so there is a stronger liklihood of stroke. You could recover fully from a stroke or you could be permanently incopacitated. Do not take the risk with your life - follow up with Stanford and seriously look at surgery as the only viable option.
Just my 2 cents worth
Moira

Hi there and a big welcome to a wonderful new club! (sorry you had no option in joining this wacky MM world....but you will find this group is one of the better aspects of having a rare disease!)

I am a sort of a (getting old) newbie.....was dx'd in July 06 and had dble bypass's (STA-MCA) done in August 06 at Stanford.

Both of my coratids were 100% blocked and having reverse bloodflow! One of the neurosurgeons I first saw suggested a "wait and see" approach as well!!!!! He was a very prominent doc.....but needless to say....we scratched him of the short list right away!

No regrets to having the surgery.....it went as smooth as silk. I still have some sx's but things are improving....especially the brainfog and overwhelming fatigue. My headaches are still around, but significantly reduced.
Oh....and I am 46yrs young with 5 great kids.....and hoping for some more good years to come.

Everyone has a story here...and many went misdx'ed for yrs. Some have better results than others. Many because of their overall condition going into surgery. Your long term results are best if you are in better pre-surgery condition. For example: some patients may never get back to prestroke conditions or may have had hemmoraging problems.

Do seek multiple opinions....do send your films to Stanford for Dr Steinburg's reading. Do follow your heart and research as much as possible. Don't panic....knowledge is power....and it will show that thankfully treatment is available and with good results (we are all walking proof of that)

And most of all....come in here....read the archives....ask questions....kick your feet up.....enjoy some support!

Big hugs to ya....Diane : )

One more thing....tell all your family members....expensive chocolate does wonders for Moyamoya!    ; )

Thank you all for your replies and comments.  This site really is great!  

Well, I have a very busy month planned.  As mentioned before, my test results were sent to Stanford, Dr. Steinberg, for the second, expert opinion.  And, as many of you know, the turn around was very quick.  (I'm wondering if I'm dealing with a 'normal' medical staff out there in Stanford?  Efficient, helpful and friendly, they are amazing!)   

Dr. Steinberg wants to run more tests and thinks that I am a good candidate for surgery on my left side.  I'm flying out to California May 10, with surgery scheduled for May 16. 

Jill called and invited me to the annual Moyamoya picnic out at Stanford.  It seems the timing of my visit to CA is just right.   

Yet another coincidence, it seems Dr. Steinberg's primary RN, Teresa, is actually flying out here to Florida for a medical conference the end of this month.  She has agreed to meet with me to discuss my situation and to answer some questions.  8)

Finally, though unrelated to the MM, I am flying to Cancun May 1-8, for a vacation.  This was planned before the MM issues came up.  But it seems, I can do both.  So paint me extremely busy and pro-active.  This disease isn't going to slow me down.   

I feel this too is perfectly timed.  If I were sitting home waiting for the surgery, I would simply worry too much.  This way I will have all of Cancun to distract me.    

Anyone been to Cancun before?  I would appreciate any suggestions as to what to visit/see while there.

Carol,

When I went for my surgeries last year they were perfectly timed also.  Two days after the release from my second surgery they had the annual MM picnic.  It was so much fun!!  Stanford put out a big "spread"...they had some really good food!!  I also got to meet so many people.  It was really nice that I could put faces to the names of people on this board.  As far as Jill...she's a real sweetheart!!  When you see her, please give her a big hug for me.

I went to Stanford within a month of having all my records sent to Dr. Steinberg and getting approvals from my medical insurance.  I left Hawaii on April 12th, and returned home on May 1st (approx. 3-1/2 weeks). Once I got home I was able to drive and I went back to work full-time on June 1st.   I was a little slow at first, but got back into the swing of things by the end of the week.

Anyway, enjoy your vacation....and think happy thoughts!!  You're in great hands!!!

Aloha,
Jan

Carol here with the lates update;

I am now in Stanford and have just spent all day yesterday at the Hospital having my first cerebral angiogram and Xenon CT brain scan.  The MM is confirmed, but only on one side (left).  I have an MRI scheduled for tomorrow morning (Sunday), and a pre-op eval with Dr. Stienberg on Monday.  A few more tests on Monday and Tuesday with surgery scheduled for Wednesday.   

Thank you all for giving me the information I needed to press forward.  What has surprised me is once I decided to move forward everything fell into place very quickly.  Mainly due to the great and very quick response by Dr. Steinberg and his staff.   

OK, the ball is in motion, but I'm not through the big hurdle just yet.  I'll keep you all posted.

Thanks DJ...
Carol Mae

Carol,
So gald to hear that you made it there okay and are doing well.  I hope your bears made the journey as well.   I have been thinking about you all week and am relieved that you finally have your dx and are moving forward.  Give Jill a hug for me and tell her that I will be there in a month with another bunch of bears.  I will be praying for you that all goes well on Wednesday.  Dr. Steinberg is the best.  You are in good hands.  Keep us posted and let us know that you are doing okay.  Big hugs.
Tracey

Carol Mae,
WOO-HOO!  That is so awesome!  I knew Dr. S would take good care of you.  I am so glad to hear that you are doing well and on the road to recovery. 
Tracey

Carol Mae,
Gald to hear all went well, Sorry we missed each other. I can also relate to dodging a big one. Robert was flowing -11 before his surgery. I thank my lucky stars we had the surgery done before a stroke. Again happy all went well.

Mike