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Roz

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Posts: 77
Gender: female

Ten Years!
Jan 21^st, 2006 at 12:42pm

Hi All,

Just wanted to share with you that I celebrated ten years to the day that I had my first lot of brainsurgery last Wednesday.

I remember... I went into hospital on the Wednesday 17th January 1996, had my surgery on Thursday 18th and was back home by the Saturday evening. It was so straightforward.

Without wanting to sound like I'm at the OSCARS, I just want to say thank you to my Mum and Dad, my two Brothers, Professor Lumley (my wonderful surgeon who gave my Parents his personal home telephone number incase they ever got worried about me when I went home), his team and all the staff (especially Suzanne and Emma - my nurses) on Lucas Ward at St Bartholomew's Hospital in London for getting me through. Thanks to all the staff at Great Ormond Street Hospital who monitored me throughout and up until I was 22, including Professor Neville and Dr. Ganesan. I will always be grateful to them all.

I also want to say thank you to my current medical team, including Professor Brown who continues to monitor me at The National Hospital for Neurology and Neurosurgery, London.

Thanks to DJ for setting up this site and to all of you here for being a great support network to people like me and all those who a new to Moya Moya.

Best wishes to you all.

Roz

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louise_and_Lydia

New Poster

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my daughter Lydia is 1
and diagnosed with MM
2002

Posts: 33
Swansea, United_Kingdom, europe, 150, 229
Gender: female

Re: Ten Years!
Reply #1 - Jan 21^st, 2006 at 9:12pm

Hi Roz,
Thats very encouraging for me to hear how well you are doing 10 years down the line. I met Dr Ganesan and Proff Lumley long with a Mr Thompson at Great Ormond street last month.

My daughter Lydia is being considered for surgery and just waiting now for a date for MRI an angiogram for Lydia to be assessed.

Sounds like we will be in good hands.

Lou x

ps, Have you read email under gatherings re UK MM members having a meet up?

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love and hugs Louise & Lydia

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Roz

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Posts: 77
Gender: female

Re: Ten Years!
Reply #2 - Jan 22^nd, 2006 at 1:00pm

Hi Lou,

Thanks for your message.

Yes, you are in good hands

I've not met Mr Thompson but I have nothing but praise for Professor Lumley and Dr Ganesan - such genuinely nice and down to earth people.

I'll be thinking of you and Lydia when you go to GOSH for the MRI and angio. You can ask Lydia if the MRI scanner still has pictures of Disney characters stuck to the top of the inside of the MRI machine.

Sorry I haven't responded to the post on the UK gathering - I wasn't sure if it was going to be a Parents get together. It would be good to meet up - I've never actually met anyone else with Moya Moya. It does make you wonder just how many of us have Moya Moya in the UK. I know there weren't very many of us around when I was first diagnosed in 1990. I've been corresponding with a couple of other girls with Moya Moya. One had her surgery before I did and her Mum and my Mum spoke to eachother befor I had mine done. Both girls are also doing very well. I will try and contact them to see if they're interested in meeting up too.

Best wishes,

Roz

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Shan Old-Time Poster Offline MM Survivor ~ May 27, 2005 Posts: 849 Honolulu, USA, usa, 376, 346, HI, Hawaii Gender:	Re: Ten Years! Reply #3 - Jan 22^nd, 2006 at 4:40pm CONGRATULATIONS ROZ!!!! HAPPY 10 YEAR ANNIVERSARY!! People like you are an inspiration to us all! I am looking forward to my 1-year mark this coming May... Take care, Shan
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Roz Junior Poster Offline Posts: 77 Gender:	Re: Ten Years! Reply #4 - Jan 27^th, 2006 at 12:29pm Thank you Shan How are your numb patches and how are your Mum's grey outs now?
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Shan

Old-Time Poster

Offline

MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: Ten Years!
Reply #5 - Jan 27^th, 2006 at 6:42pm

Hi Roz,

Thanks for asking. I'm still getting brief numb feelings in my fingers and lip which are scaring the living heck out of me. I'm going to have an MRI/MRA Perfusion Study done in the coming weeks. As for my mom, tests have shown that she has had strokes and an anneurysm! Her anneurysm was small, so no surgery intervention is necessary. She has an appt with a neurosurgeon this coming weeks. They have stopped her Premarin (estrogen) which can increase the risk of strokes. Unfortunately, she has been taking it for many many many years! Embarrassed

Once again.. CONGRATS!

Aloha,
Shan

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« Last Edit: Jan 27^th, 2006 at 6:44pm by Shan »

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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Roz Junior Poster Offline Posts: 77 Gender:	Re: Ten Years! Reply #6 - Jan 29^th, 2006 at 2:26pm Hi Shan, Sorry to hear about your continuing numb patches and your Mum's strokes and aneurism. I hope that your MRI/MRA will put your mind at ease. It did with me. Has your Mum had an angiogram to rule out MM? Will be thinking of you both at your appointments. Best wishes, Roz
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babyblue Senior Poster Offline Diagnosed 2003 Posts: 306 kennesaw, USA, usa, 417, 219, GA, Georgia Gender:	Re: Ten Years! Reply #7 - Jan 31^st, 2006 at 12:27am Hey Roz- Congrats on ten years! I know that has to be exciting. I happy about coming up on my two year I can imagine ten years to be much more thrilling. Christy
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Roz

Junior Poster

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Posts: 77
Gender: female

Re: Ten Years!
Reply #8 - Feb 1^st, 2006 at 6:22pm

Thanks Christy

Certainly is exciting. For a few years after surgery, I thought "this time a year ago...this time two years ago...this time three years ago..." then more years pass by and you think about it less but this year is special and the specific dates really stood out to me. My second lot of surgery was in May 1996 but it is the January lot that I'm celebrating. The May surgery was a bit more testing but I got through it and am here today and forever grateful to those who helped me.

Best wishes,

Roz

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YuYu New Poster Offline I love YaBB 1G - SP1! Posts: 5 Rio Rancho, USA, NM, New_Mexico	Re: Ten Years! Reply #9 - Feb 5^th, 2006 at 5:09pm Roz, Thanks for giving us hope - our son is 4 years old, newly diagnosed with MM, and due for surgery in less than a month! Congrats on 10 years!!! Cheryl in New Mexico, USA
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dragonladyRN

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Diagnosed with MM in 1985

Posts: 21
New Bedford, USA, usa, 528, 89, MA, Massachusetts
Gender: female

Re: Ten Years!
Reply #10 - Feb 5^th, 2006 at 11:28pm

Congrats!!! To YuYu's mom...my name is Renee and I am also a patient of Dr. Scott's. He performed EDAS on both sides for me back in 1985 and 1986...so my 20 year anniversary was last March for the 1st surgery. And the 20th year post my 2nd surgery will be this April. I just wanted to introduce myself...and let you know that Dr. Scott is a great guy...you're in good hands!!!

Renee

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itsme Experienced Poster Offline I love YaBB 1G - SP1! Posts: 125 aliso viejo, USA, CA, California	Re: Ten Years! Reply #11 - Feb 6^th, 2006 at 1:36am Thank you Roz and Dragonlady it's amazing and great to hear that there are VETERANS on this board 10 years, 20 years WOW it BRINGS "MUSIC" to our ears. Thanks for sharing with us and congradulations from the bottom of my heart! LOL, itsme
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Roz Junior Poster Offline Posts: 77 Gender:	Re: Ten Years! Reply #12 - Feb 7^th, 2006 at 2:03pm Thank you Cheryl, Renee and itsme Cheryl, yourself, Paul and YuYu will be in my thoughts as YuYu prepares for his surgery. Renee, WOW, 20 years - that is something to celebrate! itsme, yes, I guess you could call me a veteran. I've never thought of myself as a veteran but hey, I like it Best wishes to you all, Roz
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