Hello all,
My mother had her arteriorgram of the brain done a few days ago. The DR. who did it came out to tell us that my mother does have MM and it was in the advanced stages. I asked what he meant. When I had mine done they didn't say what stage. He then said "That there is a japanese Dr. who leveled the moyamoya disease into 4 levels and my mother was in the last stage. He also said"it was rare to have a mother and daughter to have MM" it was more common in siblings, and twins for genetics. MY mother had been diagnosed with it a few months after me due to some of her test results but, thay wanted to be 100% sure.
Has anyone heard of the 4 levels before?
 Thanks Lena

Hi Lena,

Here are the different "stages" of moyamoya, according to the American Society of Neuroradiology.

ICA Stage Angiographic Findings

I      Narrowing of the carotid bifurcation
II    Dilatation of the ACA and MCA with appearance of ICA
      moyamoya
III   Partial disappearance of the ACA and MCA with
      intensitication of ICA moyamoya
IV    Advanced stenoocclusive changes in the ICA
      (ACA and MCA are traced very dimly or in a
      completely different shape) with small amount of
      ICA moyamoya
V     Absence of the ACA and MCA with frther reduction
      of ICA moyamoya
VI    Blood supply only from the external carotid artery
      with almost complete disappearance of ICA
      moyamoya
Note:  ICA, ACA, MCA indicate internal carotid, anterior and middle cerebral arteries, respectively; ICA moyamoya, moyamoya vessels at or around the terminal part  of the ICA
*Adapted from Suzuki et al

PCA Stage Angiographic Findings

1.  No occlusive changes in the PCA
2.  Stenosis in the PCA with or without slightly developed
    PCA moyamoya
3.  Severe stenosis or virtually complte occlusion of the
    PCA  with well-developed PCA moyamoya
4.  Occlusion of the PCA with decreased PCA moyamoya
Note:  PCA indicates posterior cerebral artery; PCA moyamoya, moyamoya vessels from the the PCA.

Now, I'm just kind of talking off the top of my head about this so don't hold me to it, but I'm thinking maybe many of us aren't told what "stage" we have for a couple of reasons.  They (radiologists/doctors etc.) probably think we wouldn't completely understand what they are talking about, so why bother. :-/  Or, again this is me just talking out loud, these moyamoya stages aren't significantly important and doctors don't want to scare us with "stage" numbers. :-/  Maybe, unlike something like the stages of cancer, it doesn't mean it isn't treatable.  To me, the stages represent the progression of the MM in each individual.  Or, finally, I could be all wrong about all of this! [smiley=rolleyes2.gif]

Have they talked about surgery yet on your mom?  

Hang in there Lena and give my well wishes to your mom.
[smiley=hug.gif]Lisa

Hey Lisa,

That sounds right - thanks for the details and descriptions!  I was told there are four stages, and I was stage four on both sides.  The doctors told me a vague description of mild, medium, moderate, and advanced as the stages (sounds like hot sauce).  I never inquired for details, so this helps a lot!  

Lena, I hope things will work out for you and your mom.  I am sure they will.  

Best wishes,
Trina

Lena,

Great question. Thanks for asking the question as I have never heard of the different stages. Of course, the doctors here had never heard of MM so why would they know there are stages? LOL

Thanks Lisa for such superior research and ultimate information. WOW!!

Trina, thanks for the laughs. I like the salsa correlation.  [smiley=crackup.gif]

Lena, keep us posted about your mom. Only the very best to you both.

Also, I read where MM was more common in Asian woman and children than in siblings. I will go back and try to find that info. If anyone else has come across this same info please let me know. I could be totally off on this and maybe got confused somewhere along the way.

Hugs Lena to you and your mom, [smiley=hug.gif]

Lore    

Thanks guys,
  This does help. Yes, surgery is on the list. Mom ended up back in the hospital for 3 more days the day after the angio, the morning I wrote this. She was almost sent out to surgery Immediately. They did send her home Friday duriing our snow storm. She spent the weekend . Her appt. is for the 28th of Dec. to discuss the plan.               Thanks Lena

Wow, Lisa.  Thanks for the info.  I too did not know of the "four" stages!  I'm wondering what stage I was in when I had my surgery on my right side..and more importantly, what stage my left side is currently in!  [smiley=huh.gif]

Lena,

So sorry to hear about your mom; nonetheless, I'm glad to hear that she was able to be properly diagnosed.  You are the first mother/daughter with MM that I personally know of, and I thank you for sharing that info with us.  I am the first in my family, or that we know of, with MM.  However, I believe "stroke" does run in our family.  It only makes me wonder if they were just never properly diagnosed!  [smiley=huh.gif]  Please let your mom know that she is in our prayers too...just like you!  Be strong for her Lena and let us know if there's anything we can do for you and your family.  [smiley=hug.gif]

Take care,
Shan

Hi all,

It was interesting to read your post Shan, because funnily enough I have the same feelings. I wonder at what stage I was at when I had the surgery, and like you, there is a history of stroke in my family. My mom died of a stroke when she was 63 and she would suffer from neuralgia in her face for years. She didn't have a weight problem and I don't believe her blood pressure would have been high - it's all conjecture but it really makes you wonder.

Regards Moira

I hear you Moira!  This only goes to show that more studies are definitely needed for this so called "rare" disease.  I still feel that maybe this may not be so "rare" after all.... :-/  Maybe just mis or not properly diagnosed...  Just my thoughts...(as you know it wasn't until my THIRD opinion that I was properly diagnosed).  It scares me to think that if I just listened to my first and second opinions, I would be sitting here having TIA's and just waiting for a major stroke to take place!  Yikes! [smiley=eek.gif]

Lena, Please let us know how your mom is doing.  Please stay strong for her.  Lean on us for support...we're here for ya'...

Take care,
Shan

Hi Guys,
 Going to Appt. today with mom at neurologist. He is going to go over things. I just want it to go well for her.
I will let you know what happens.  
 lena.......... [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif]

Hello,
Mom is going to see same Brain surgeon as I had, to go over things.   Lena......