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who is the oldest living person with Moyamoya? (Read 64466 times)
b1uesmiley
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who is the oldest living person with Moyamoya?
Oct 6th, 2010 at 7:20pm
 
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.  Cry

Is this true???

Can anyone with Moyamoya share their age?
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jklunning
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Re: who is the oldest living person with Moyamoya?
Reply #1 - Oct 6th, 2010 at 8:41pm
 
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 +.
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Skay5709
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Re: who is the oldest living person with Moyamoya?
Reply #2 - Oct 6th, 2010 at 10:28pm
 
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
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STrantas
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Re: who is the oldest living person with Moyamoya?
Reply #3 - Oct 7th, 2010 at 11:49am
 
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
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Judy O
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Re: who is the oldest living person with Moyamoya?
Reply #4 - Oct 7th, 2010 at 4:54pm
 
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...
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Mayhem
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Re: who is the oldest living person with Moyamoya?
Reply #5 - Oct 7th, 2010 at 5:44pm
 
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.
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Larry
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Re: who is the oldest living person with Moyamoya?
Reply #6 - Oct 7th, 2010 at 6:27pm
 
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.
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gotchlorine
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Re: who is the oldest living person with Moyamoya?
Reply #7 - Oct 7th, 2010 at 6:42pm
 
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
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Re: who is the oldest living person with Moyamoya?
Reply #8 - Jan 7th, 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.
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Little Luca
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Re: who is the oldest living person with Moyamoya?
Reply #9 - Jan 10th, 2011 at 6:43am
 
luckyone2335 wrote on Jan 7th, 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)
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1st stroke in September 2008, age 10 months
Bi-lateral mm diagnosis
2nd stroke in November 2008, age 1 year old
Left side surgery in December 2008
13 years on now
Doing just great!
 
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STrantas
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Re: who is the oldest living person with Moyamoya?
Reply #10 - Jan 10th, 2011 at 9:42am
 
luckyone2335 wrote on Jan 7th, 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
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« Last Edit: Jan 10th, 2011 at 9:44am by STrantas »  

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LA
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Re: who is the oldest living person with Moyamoya?
Reply #11 - Jan 30th, 2011 at 10:29pm
 
Question?
Where did LuckyOne have his surgery 38 years ago?

I had my surgery in 2000 at age 50.

Interesting topic
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Linda (LA)
 
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STrantas
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Re: who is the oldest living person with Moyamoya?
Reply #12 - Jan 31st, 2011 at 9:24am
 
LA wrote on Jan 30th, 2011 at 10:29pm:
Where did LuckyOne have his surgery 38 years ago?


He hasn't had surgery yet...
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A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04
STrantas http://www.facebook.com/home.php?#!/strantas?ref=p STrantas  
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b1uesmiley
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Re: who is the oldest living person with Moyamoya?
Reply #13 - Feb 21st, 2012 at 5:44am
 
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  Smiley
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Re: who is the oldest living person with Moyamoya?
Reply #14 - Feb 21st, 2012 at 12:33pm
 
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
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Re: who is the oldest living person with Moyamoya?
Reply #15 - Apr 12th, 2012 at 6:10pm
 
I am 43 and was diagnosed with Moyamoya this year in January.  I have bilateral surgeries and my doctor says I am doing great. Grin
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Re: who is the oldest living person with Moyamoya?
Reply #16 - Apr 16th, 2012 at 8:29pm
 
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!
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Wife had surgery 1986. She is marvelous!
 
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Emily
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Re: who is the oldest living person with Moyamoya?
Reply #17 - Apr 23rd, 2012 at 8:14am
 
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)?
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Re: who is the oldest living person with Moyamoya?
Reply #18 - Apr 25th, 2012 at 1:23pm
 
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 Wink

Good luck everyone!
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Re: who is the oldest living person with Moyamoya?
Reply #19 - Apr 29th, 2012 at 11:46pm
 
I am 27  :-?
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Re: who is the oldest living person with Moyamoya?
Reply #20 - May 3rd, 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!
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Re: who is the oldest living person with Moyamoya?
Reply #21 - May 3rd, 2012 at 6:06pm
 
Nanstev wrote on May 3rd, 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! Smiley
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Re: who is the oldest living person with Moyamoya?
Reply #22 - May 6th, 2012 at 1:53pm
 
Thanks Emily Wink
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Re: who is the oldest living person with Moyamoya?
Reply #23 - Jun 20th, 2013 at 5:01pm
 
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. Smiley silverfoxclark
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Re: who is the oldest living person with Moyamoya?
Reply #24 - Jun 20th, 2013 at 10:43pm
 
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...
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