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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › New to this website and MoyaMoya

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New to this website and MoyaMoya (Read 2514 times)

Reagan

Junior Poster

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Posts: 75
Lee's summit, USA, usa, 302, 159, MO, Missouri
Gender: female

New to this website and MoyaMoya
Jan 11^th, 2008 at 7:27pm

Hello,

I have to say that I am glad I found this website. I have been diagnosed with MoyaMoya for only 2 days now. I am 28 years old and this diagnosis was by chance. I have had no symptoms but headaches and major pressure change feelings in my head. In 2003 I had an MRI/MRA that showed that I did not have a left middle cerebral artery. They thought I had a possible anuerysm. Nothing went further than that. I just had an angiogram on Wednesday to rule out an aneurysm and that landed me with the diagnosis of MoyaMoya. I have been in contact with Stanford already and am overnighting my films to them tomorrow. This disease scares me to be honest, but I am finding comfort already in knowing there are options out there and most of all support from people who are experiencing this. Thank you DJ for the time you spent starting this forum and website.

Reagan

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moyamoi

Ex Member

Re: New to this website and MoyaMoya
Reply #1 - Jan 12^th, 2008 at 2:30am

Hello Reagan,
Well you are doing all the right things in tackling this disease and it is conquerable with the right approach. Of course you feel scared with what you are going through, but that is probably because you don't know an awful lot about anything yet - it is the fear of the unknown. But most people on this forum had their diagnosis sprung on them, either after they presented with a stroke or TIA, and it is a real shock to the system.
But from what I have gathered about Stanford and Dr Steinberg, you are putting yourself in capable and knowledgeable hands.
We are all here to support and answer any questions that you may have.
Moira

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KTiller

Senior Poster

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Posts: 355
Freeland, USA, usa, 51, 28, WA, Washington
Gender: female

Re: New to this website and MoyaMoya
Reply #2 - Jan 12^th, 2008 at 3:47pm

Hi Reagan,
Not a great way to meet, but know that you have a lot of support here. For me the scariest part of moyamoya was learning the prognosis if nothing was done. Once I found Dr. Steinberg and got my films to him, I breathed a huge sigh of relief. I had my sugeries only ten weeks ago. Dr. Steinberg, Teresa, Jill and all of the staff at Stanford Medical Center are so very, very capable and supportive. Knowing I was in the care of the most experienced and dedicated moyamoya surgeon and experiencing the constant and loving care from everyone I met with while at Stanford Medical Center made it possible for me to relax and concentrate my energy on my healing. I trusted them completely and I don't give my trust easily. Jill will make a point of introducing you to other moyamoya patients and their families. She will visit your familily during your surgeries, keep them informed of your progress, and answer their questions. She is the most loving and caring person I have ever met.
Don't hestitate to ask any questions you have of those at Stanford or of any of us here on this website. You can send personal email to any of us, if your question is sensitive and you'd rather not broadcast to everyone.
You're on the right track - take a deep breath - and know that you'll get through this and have a wonderful life ahead of you.
Kim

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Sheila

New Poster

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Stanford surgeries scheduled
1/29 and 2/6 2008!

Posts: 9
Stanwood, USA, usa, 53, 25, WA, Washington
Gender: female

Re: New to this website and MoyaMoya
Reply #3 - Jan 13^th, 2008 at 3:45am

Hi Regan:

I have been living with a MM diagnosis for almost two years and will finally be traveling to Stanford for surgery later this month. I think the two most frightening times in this journey are when you're first diagnosed, and when you're waiting for surgery. Been through part one...waiting on part two! Both places are full of the unknown, but you've taken a brilliant first step by connecting with this message board.
As you move along your path, know that you have excellent information and tons of loving support here. We've all either been where you are, and in some cases, have gone where you're going. The good news is that there are a lot of us here to help you along the way. Just ask.
I'm sitting here in the wee hours of the night reading over some of the past posts. I couldn't sleep because I'm nervous as heck about leaving home and family for an adventure that wasn't in my wildest dreams a few years ago! But I'm ready to shut down the laptop and get some rest because I was able to see that there are a whole herd of people here who have come through this beautifully. Reading about the experiences of others reminds me that I'm not alone in all of this. Neither are you! Hang in there and, as Kim said, just take a deep breath. You're on the right track.

Sheila

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