Based on all the research. It has been stated that it is rare to live past your fourties having Moyamoya or Moyamoya symptom like conditions. I am 31 years old, and I don't wish to believe that I have less then 10 years.  :'(

Is this true???

Can anyone with Moyamoya share their age?

jklunning... I am 52 and have not yet had any surgeries. I have had 2 strokes since I was 45. Physicaly I am fine, but it affected some lose of vision. But I cam leagaly drive, so thats a +.

I was diagnosed with mm at the age of 52. Had indirect bypass one year later. I am now 58 and feeling fine. Don't dwell on what could happen. Live your life to the fullest and be thankfull. Live one day at a time

Sorry - in all my research - I've never read anywhere where they state a life-expectancy for patients with Moyamoya.  Curious as to where you read that....

-Shari

I'm not sure where you read that either.  I'm also 31 (and had my surgeries at 29), and would prefer not to think about how long I have left, but instead how I am spending it.  Besides, Dr. Scott has operated on people who have lived for decades.  I can't imagine your info could be accurate...

I was diagnosed at age 32, surgeries at 36 and 37, now 46. My brother had his surgeries at 44, and he died at 54.

I will be 57 on Nov.11 this year. Was diagnosed in March and had surgery on my right side 0n June 17th. I saw Dr. Rasmussen at the clinic yesterday after having MRI/MRA/MRP. Scan results were not viewable at my appt. He has tenatively scheduled my left side surgery for Nov. 4th.

I also have never read or heard of a stated life expectancy for moyamoya patients.  What I have heard is that treatment (surgery) puts patients on an even playing field with non-moyamoya patients.  In other words, once treated, the risk for stroke is the same as for anyone else.  Other things contribute to risk factors (weight, smoking, etc.), but the chance of stroke from moyamoya is minimized following treatment.

That said, I know a whole bunch of moyamoya patients, who have had surgery(ies), are well past their 40's (some into their 70's), and are very alive and doing well.  I, too, am curious where you read this.  Could what you read possibly have been referring to untreated moyamoya?  Given the progressive nature of MMD, that would make more sense to me, although no one knows what the rate of progression from patient to patient will be.  The variance can be huge.

Would like to hear more discussion!

Jill

My husband is now 41 he was dianosed with moya moya when he was 3 yrs old. He has never had any surgery or taken meds for it. all he has ever done was taking 1 asperin a day everyday his whole life. He has been told his whole life he will not live past 18 then it was 21 then 30 and so on and he is still here tell this day. He had a strok when he was 3 yrs old that is how he was dianosed with this.

luckyone2335 wrote on Jan 7^th, 2011 at 8:01pm:

My husband is now 41 he was dianosed with moya moya when he was 3 yrs old. He has never had any surgery or taken meds for it. all he has ever done was taking 1 asperin a day everyday his whole life. He has been told his whole life he will not live past 18 then it was 21 then 30 and so on and he is still here tell this day. He had a strok when he was 3 yrs old that is how he was dianosed with this.

Hey luckyone2335

I think that's amazing! More than a little hope and inspiration in your husbands story for me. Has no one suggested surgery or has he just opted not to have it?

Take care
Mark (Luca's Dad)

luckyone2335 wrote on Jan 7^th, 2011 at 8:01pm:

My husband is now 41 he was dianosed with moya moya when he was 3 yrs old. He has never had any surgery or taken meds for it. all he has ever done was taking 1 asperin a day everyday his whole life. He has been told his whole life he will not live past 18 then it was 21 then 30 and so on and he is still here tell this day. He had a strok when he was 3 yrs old that is how he was dianosed with this.

While I agree this is quite amazing, I believe this is a rare exception!  We all know this is a progressive disease - it doesn't get any better with time.  I'll restate the question - has no one ever suggested surgery?  In my opinion, this is a risky approach to take, as 38 years ago (41 yo, diagnosed at 3) was a long time ago!  Look at the advances they've made in medicine!  If it this were me, or my husband or any other loved one, I would look in to meeting with a neuro who is familiar with MMD.

-Shari

Question?
Where did LuckyOne have his surgery 38 years ago?

I had my surgery in 2000 at age 50.

Interesting topic

LA wrote on Jan 30^th, 2011 at 10:29pm:

Where did LuckyOne have his surgery 38 years ago?

He hasn't had surgery yet...

Thank you for all your replies to my inquiry. My apologies for the delayed reply. Let me further explain...

My research indeed refers to a MM patient who has been diagnosed and has not yet had treatment (surgery).

While it is obviously preferable to have surgery done to prolong/even prevent MM in offsetting any strokes; my research suggests that the chances are higher in having a stroke the longer MM goes untreated (surgery).

In my case. I had an EC/IC bypass surgery done (August 2010) but the surgery was unsuccessful. I have now been trying to recover from the surgery, but it has proven to be quite slow. I've had quite a bit of set backs with my recovery. This puts me right back where I began; my MMD still untreated. My stroke symptoms have been slowly progressing.

I understand surgery is favorable when done before a stroke and least favorable after having a stroke.  So this is where my concern lies, given the progressive nature of MMD; Prompting my question:

What is the oldest someone has lived stroke-free with their MMD untreated (without any brain surgery done)?   


Any replies would be greatly appreciated  :)

Hi - small contribution from UK (it happens over here, too!
As I understand things, MM can show itself  in varying degrees of severity.  I'm told I have Moya-Moya syndrome, which I guess is similar but different. I had some syptoms from my teens, bad migraines in my twenties, visual and speech disturbances thereafter, and blacked out/fitted a couple of times in my fifties, before the problem was diagnosed.  I suppose it was a long time developing, and a replacement blood supply had time to establish itself, so, with the late diagnosis, surgery was never even considered.
I feel pretty stable now (occasional dizzy days), and not much less fit than many people my age (61 so far).  Headaches have pretty much disappeared, so I guess the clever old body is coping fairly well.
Anyway, I wouldn't give up yet!  Best of luck

Andy

I am 43 and was diagnosed with Moyamoya this year in January.  I have bilateral surgeries and my doctor says I am doing great. ;D

AFTER Surgery in 1986, my wife continues to live a life full of gardening housekeeping and volunteer work at the age of 55. BEFORE Surgery, she was in a downward spiral of health due to strokes that took 50% of her vision, a loss of her speech and reading, and hemi-paresis(sp?) all of which remain to this day. I agree with Skay5709, live a full life. Look for more opinions on surgery, I'm glad we did. Good Luck!

This is a bit of a tricky one, as has been previously mentioned, people have very varying degrees of the condition/disease.
Some people would not live without surgery (ie. if both of their carotid arteries were completely occluded), however some people clearly would and have. You can have the Moyamoya appearance/behaviour of the blood vessels to a degree where they become narrower and small collaterals grow however the vessels don't completely close off, and often using aspirin is enough to keep the blood flowing through. I haven't heard of many of these cases but some people here seem to fall into this category. You would still want to keep an eye on the progress regularly and be on the alert for any TIA symptoms.
It is hard to say at what rate someone's condition would progress, I have found that most doctors will err on the side of caution with MM because there just aren't enough statistics or consistency across the board with the varying cases for them to know/predict what could happen.

I have never come across anything to do with life expectancies, especially particular ages such as "40's"... It also depends upon when someone contracts the disease, which as far as I know, no one can say for sure. The time between my first symptoms and me being fairly incapacitated was only 2 months.. Whereas for many people they don't even reach that stage. (I had several strokes before my surgeries and I have never heard that it's unfavourable to have surgery after a stroke. I guess obviously once you've had a stroke then the risks of a repeat are higher, but in my case not having the surgery was not an option.)
It also is not possible to say whether I had MM for years and then it rapidly progressed or if it just popped up out of the blue at age 23.

Are you on any medication and have you been diagnosed through a cerebral angiogram? Do you know the % or amount of narrowing of your internal carotid arteries (ICA)?

I am turning 40 in may. got diagnosed last november. Came back from professors today. No surgery just yet, because the blood flow is still going reasonably. Due to that, ther are not enough MMvessels that flood the right part of my brain, which is needed to get through the surgery safe and sound. So am just taking bloodthinners and keppra for epileptic seizures. Will have MRI's every other 6 months to check if things are stble.

I guess there is no certain age, just living every day to it's fullest while we still can. But that is what EVERYONE should do. Not just us MMpatients ;-)

Good luck everyone!

I am 27  :-?

No matter what age you get diagnosed, it's always a hard thing to hear and accept that it's just the way it is.  I have my ups and downs. And like stated earlier, there is no guarantees of any kind. LIVE!

Nanstev wrote on May 3^rd, 2012 at 12:57pm:

No matter what age you get diagnosed, it's always a hard thing to hear and accept that it's just the way it is.  I have my ups and downs. And like stated earlier, there is no guarantees of any kind. LIVE!

Just wanted to "LIKE" this post! :)

Thanks Emily ;-)

I was diagnosed with MMD June 2011 at the age of 64.   My first surgery was on July 26, 2011.  The evening after the surgery I had a mild stroke.  On Sept 1, 2011 I had my second surgery.  Both was an EDAMS procedure as my blood vessels are too tiny. I will be 67 this coming Nov. 2013.  I say I've come a long way and will live my life to the full as any person would.  with or without MMD. :) silverfoxclark

Go you!!

I wonder when it developed... hmm that's probably the only unknown that i'm really curious about (in general) not why or how but when...

That's exactly what happens when people start to do their own reading and research on the internet  :D

My doctor gave me one very good advice five years ago, he said:

"Here is your diagnosis, I strongly advice against reading anything about on the internet because it will only make you more sick and 90% of it is total bull".

And he was right. Stay OFF the internet when informing yourself about ANY disease. Speak to doctors and experts or other patients ONLY. Don't read internet garbage.

I has my first STA-MCA at 56 in 2006 on my left side. I am going back to discuss further surgeries I am 63. :). I have found this site very helpful, Dennis is right but just a little bit. In 1994 for 2 months I had unstable angina. I went to 2 doctors and 5 visits to the emergency room with 7 different diagnosis, but because I am female and was only 43  my heart was never considered. I have learned to ask and question, then get a second opinion.  Doctors make mistakes read everything ask everyone.

Do not know whether this question is still of interest. I was diagnosed this year with unilateral MMD. I am 71 and it seems as though I am in a league of my own. Am still undergoing testing..had a small hemmorhagic stroke that got me diagnosed. I am asymptomatic .....cannot believe
Anything is wrong, as feel normal. Would like to know if anyone in my age group has MMD and how treated.
pat101harris@ gmail.com