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Moyamoya.com Forum › NON Moyamoya Related Topics › Daily Jibber Jabber › NEW TO MM.COM

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NEW TO MM.COM (Read 3718 times)

Nathen

New Poster

Offline

Posts: 2
Reedsport, USA, usa, 27, 72, OR, Oregon
Gender: male

NEW TO MM.COM
Sep 4^th, 2006 at 1:20am

Hi, my name is nathen and I'm from Reedsport oregon in the US. I was I was diagnosed with Moyamoya when I was 16. after having ALL(acute lymphoblastic leukemia) when I was 2 and a half and it came back on my 15th birthday. when it came back we found out that it was in my spinal cord wich ment we had to do radiation, then I started having strokes, and my doctors told me that I had Moyamoya, not just strokes. I had my opperation at 16 and now I have TIA(minor ascemic attacks)not sure if I speled that right. I finished high school with my graduating class that I began school with. That was a big thing for me! and now I'm 24 and just found this page, I'm glad to be a member and hope to talk to as many people as I can. Thank you for being here! Nathen

ok I forgot to put this in when I first wrote this the doctor that did my surgery's name is Kim Burchull from O.H.S.U (Oregon Health Science University) in Portland Oregon. I had surgery on the left side of my head and I had an exterier to interier bypass and muscle graff, back in 1998.

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« Last Edit: Sep 4^th, 2006 at 6:32pm by Nathen »

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Mar

Ex Member

Re: NEW TO MM.COM
Reply #1 - Sep 4^th, 2006 at 8:58am

Hi Nathen, Smiley

Welcome to our MM family!

I can see you’re a real fighter to have gone through all you have, God love ya! I sure do welcome your strength and courage to our group. There are some wonderful people here that would be happy to talk to you, I’m sure. I encourage you to look over the website, watch the video's and read all you can. There is a wealth of information here and you’ll find many other courageous, loving people as well.

Did you have surgery on both sides and who did your surgery and where? We like all the information we can, to perhaps help others in the future to find doctors with MM experience. We have found that knowledge is power fighting this rare disease, so we welcome all the information we can get and any input on the doctors and procedures you might want to share.

Mar

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gotchlorine

Old-Time Poster

Offline

Our daughter, Tara, lives
with MM

Posts: 776
San Jose, USA, usa, 24, 158, CA, California
Gender: female

Re: NEW TO MM.COM
Reply #2 - Sep 4^th, 2006 at 12:23pm

Hi Nathen,

Glad you found us, and welcome to the family! You must have been surprised, as I know that 8 years ago there wasn't anything like this site out there. You've come to a great place for sharing and support.

I'm the mom of a 19 year old girl who had her diagnosis and surgeries just over 2 years ago. She (Tara) is doing very well, but it was a frightening road - we felt like we were the only ones in the world traveling it at the time.

As Mar said, we'd love to hear more about you, so please share if you're comfortable in doing so. Given the timing of your surgery, there may be quite a bit you can learn here as well. We'll definitely be here for you!

Warmly,
Jill

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Lore

MM.com Benefactor

Offline

My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female

Re: NEW TO MM.COM
Reply #3 - Sep 4^th, 2006 at 1:30pm

Welcome Nathen,

Thank you for sharing your moyamoya story with us. WOW! What a journey you have had. Your story is inspiring and provides hope for all moyamoya folks. You have had to overcome a lot for someone your age.

I am the sister of a brother who has moyamoya. His name is Kevin (Cubbie). He is 49 but had his first stroke at age 43 and in retrospect, noticed signs of moyamoya in his 30's. He unfortunately went misdiagnosed and undiagnosed until we found this site which ultimately led us to Dr. Steinberg at Stanford a little over a year ago. Kevin had two STA-MCA surgeries at Stanford a year ago this past May and is doing very well considering he had two strokes (one significant) and a hemorrage and also has a dissected right upper internal carotid artery.

You have come to the right place to learn about moyamoya. This site is everything to a moyamoya patient and their family in terms of learning about the disease and sharing experiences with other moyamoya folks. This is a great group of people who will welcome you and share their experiences with you. I hope this site is a comfort to you to know you are not alone and have the support of all who have walked in your shoes.

Feel free to ask questions and as the others mentioned, we are interested in your journey and would like to hear more about you and your experiences with moyamoya treatment.

Hugs,

Lore

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson

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elaine

Experienced Poster

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I love YaBB 1G - SP1!

Posts: 200
Sanford, USA, usa, 465, 285, FL, Florida
Gender: female

Re: NEW TO MM.COM
Reply #4 - Sep 4^th, 2006 at 4:02pm

Hi Nathan

Welcome to "OUR" Family ; Grin

I am an Adult w/mm Cry

I had a Major Stroke in Nov. 1997 and was paralized on my left side for almost 2 months but wasn't DXed till my 1st surgery on New Years Eve. 1998-99 Sad

And back then there was little or NO information about MM but THANKS to DJ, there is this Wonderful Site with SOoooooo Much Helpful Information Cheesy

WELCOME TO "OUR" FAMILY Kiss

And please keep us updated and watch for next years "FAMILY REUNION" we have had 2 so far and it is AWSOME to meet with so many others w/mm, there are several around your age that come.....TAKE CARE.....GOD BLESS YOU;;;;;;

Elaine

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lotsofkids

MM.com Benefactor

Offline

Moyamoya...Oh boya boya!

Posts: 333
Akron, USA, usa, 421, 123, OH, Ohio
Gender: female

Re: NEW TO MM.COM
Reply #5 - Sep 5^th, 2006 at 11:05am

Welcome aboard....This IS YOUR personal little corner to hang out in..... as you are an authentic MM'er!

Glad you found this site, it's a wonderful cornocopia of occluded people! I think you'll like it here.

I was just dx'ed in July and I have recently finished both right and left STA-MCA bypasses with Dr Steinburg at Stanford. I am currently, still hanging out at the hotel recovering at the moment.

This site gave me a lot of information, hope and support while I was aggressively trying to figure out my dx and my surgical options.

Hope you are in good health and good spirits now!
Warm wishes to all.......Diane : )

Hmmm....seems I'm kinda "special" LOL

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