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Moyamoya sufferers in UK (Read 3082 times)
Eleigh
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I Love MM.com!

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Moyamoya sufferers in UK
Mar 2nd, 2016 at 5:07pm
 
Hi All,
My partner (white male, 30 years old) was diagnosed with MM in Aug 2015 following progressive loss of control/strength in his legs (initially put down to a knee injury from 2007!).
He had a STA-MCA bypass and indirect revascularisation on his right side in late Nov 2015, and we are now awaiting the results of a CT Angio to see if this has helped the blood flow. He has MM on both sides of his brain and will potentially need another two surgeries.
I just wondered if anyone on here is from the UK? There is so little info about this condition in the UK and as such very little support for sufferers  Sad
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willowz
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Hope Springs Eternal

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Re: Moyamoya sufferers in UK
Reply #1 - Mar 8th, 2016 at 6:13pm
 
Hi Eleigh -I was looking through the guestbook on here and found a recent (2015) post from Kelly in London about her mom being diagnosed with MM. Her email is  Kjbangel0@yahoo.co.uk

Good Luck with everything. Smiley
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toggie
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manchester UK
Gender: female
Re: Moyamoya sufferers in UK
Reply #2 - Apr 30th, 2016 at 7:36am
 
Hi Eleigh,
My son, Ciaran, has MM and was diagnosed after a stroke in 2009. He subsequently had 2 ops to re direct arteries from the scalp to the brain ( not sure if that's what you meant by indirect revascularisation ) in the same year. He's doing well now apart from some weakness remaining on his right side, but has had MRI scans a couple of times since which suggest that the ops were successful.
I feel for you because there is so little information... I visited this site for a while but haven't recently.
I'd be happy to speak to you if you want any info on Ciarans ops etc, just let me know. Scary as it was when he was going through it he's been well since!!
Smiley Smiley
Tina
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