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?"   [smiley=huh.gif]
  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.   :o
  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.   [smiley=thumb.gif]  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

Hello, Carol

Glad you found this site!  I think your Dr. did the right thing in contacting Stanford.  Your neuro may be right, but a second opinion may save your life or your life as you know it!  It is true this disease progresses differently from patient to patient and some have been dx'd as late as their 60's, but I don't think it's something to be nonchalant about.  While some folks have good recovery from stroke, it is a long process, if you survive.  Dr. Steinberg is an excellant choice to determine if the surgery is required or not.  If you are a believer, I'd say pray for guidance on this.  I'll be praying for a good outcome for you.

Sue (my son, Kyle, has MM)

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 Carol

I was dx Sep 05 aged 43 - I too was asymptomatic.
My first advice was to see a neurosurgeon - short story - I had double bypasses Nov 05 and have had not a regret. (nor do I live feeling like a timebomb !)

I'm with Moira and Sue.

Helene

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!    ; )

Hi Carol,

I was diagnosed approx. 2 years ago with MM.  I'm Japanese and was 42 years old at the time of the diagnosis (I suffered a stroke and had to be flown to another island for testing).  The first neuro I saw had a "wait and see" attitude about my situation.  From that moment, I kind of took matters into my own hands and got all my records from the hospital and the e/r and had it sent to Dr. Steinberg at Stanford.  My neuro on Kauai said that it would best that I get a second/third opinion.   Since MM is progressive, it would be in your best interest to get a second opinion.  FYI...I just celebrated my 1 yr. annivesary of my first surgery on Thursday and will be celebrating my first anniversary of my second surgery next Thursday. It may not seem like a big event, but for me, it like getting a second chance at  life and I'm feeling great!!

Everything may seem really overwhelming, but with this group you should feel just like "family"!!!

Aloha no....
Jan

Thank you all for your replies and comments.  This site really is great! [smiley=wink2.gif]  

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!)   [smiley=wink2.gif]

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.  [smiley=smug.gif]  

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.   [smiley=headbanger.gif]  

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

wow cool your just as active as i was after my surgery.  i too had trip planned 2 wks after my surgery was a little slow but no stopping me.  so what did dr. steinberg say about your right side?? nothing yet?? awesome i too was asymptomatic but i did suffer a mini stroke and my dr here in hawaii says i should do my other side because it's not normal.  so now the delimna is wether to have it done sta-mca or edas.  so we'll c

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

Hello,

Thanks for writing Carol.  I am also just diagnosed similarly with moyamoya and am 48 years old.  I wondered if i needed to do anything since I was asymptomatic.   But then, I thought what are my options - wait for a stroke?  That sounded too  dangerous.

I wanted to know if the doctors (neologists etc.) could do any other kind of monitoring to see WHEN surgery should be done - or if there was a way to measure what stage the disease was in.  Can any kind of medication help?  

I just wrote to Dr. Steinberg and he already responded via email.  He wants to review my MRI / MRA images.  
This seems to be a dangerous disease.  My life has turned around in less than a week.

Look forward to more sharing and info.  

Cynthia

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.   :P

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, We are crossing paths, have a scheduled appointment with Dr. Steinberg on monday as well, maybe we will meet, Jill is pretty good about that. If you need anything let us know, and we will help you any way we can......Just show you know, in my opinion the biggest Hurdle was getting the DX the surgery went flawlessly and you should have nothing to worry about. Your in very capable hands with Dr. Steinberg.

Mike

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. [smiley=hug.gif]
Tracey

UPDATE!  The surgery was last Wednesday and it went flawlessly!   [smiley=headbanger.gif]

I had the direct by-pass by Dr. Steinberg and his amazing team here at Stanford.  Now that it is all over I have absolutely NO doubt that this was the right think for me at the right time.  In the ICU after surgery Dr. Steinberg told me that during the surgery the blood flow in my brain was very low and that they were able to increase it immediately.  When I asked why I hadn't experienced any damaging symptoms, his answer was a simple shrug and a "you were just lucky!"  I really think I dodge a big one! [smiley=bow.gif]

I have 16 staples starting from just in front of my left ear going up about 4 inches.  I was in ICU for less then 20 hours.  They released me from the Hospital on Saturday by noon.  And I am waiting to get my staples out this Wednesday, and have reservations to fly home to Florida on Thursday!  I really feel terrific!  And am recovering very well!   [smiley=thumbsup.gif]

I will be in Texas for the MM gathering next month and look forward to meeting some of you all.  

Thanks to DJ and to all on this site for our support and information.  It is one of the best things about this whole process!  

Thanks all!

Carol Mae

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,

Sorry we missed each other, I am very glad  all went well with your surgery. I can relate with the dodging a big one remark, robert was -11 on his blood flow. I thank my lucky stars every day that we were able to have the surgery done before he had a debliataing stroke.  Again i am glad all went well
Mike

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