Click this link to read a post I like on the moyamoya.com message board...

Dec 8^th, 2025 at 5:07pm

	Welcome, Guest. Please Login or Register
	NEW search box below... Search Moyamoya.com with Google!

Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › Word is getting out there

(Moderators: DJ, MrsDeej)

‹ Previous Topic | Next Topic ›

Pages: 1

Word is getting out there (Read 3829 times)

smitty39

New Poster

Offline

I love YaBB 1G - SP1!

Posts: 27
Lyn, Canada, canada, 407, 383, ON, Ontario

Word is getting out there
Sep 22^nd, 2008 at 4:02pm

Hi everyone

Just wanted to let people know that medical personnel are starting to learn about moya moya disease. A friend of mine is a nurse in the stroke clinic at our local hospital. She recently went to a seminar in Hamilton Ontario on "Strokes in Young People". Believe it or not moya moya disease was discussed in the seminar as one of the conditions that can cause a stroke. She told me she was quite surprised because the only case she's even heard of is mine. I think it's great. Now a few hundred more people in the world know what it is. Hopefully it's something they will continue to educate the medical field about.

Debbie

IP Logged

Click Here to visit the Moyamoya.com Facebook page!

Shan Old-Time Poster Offline MM Survivor ~ May 27, 2005 Posts: 849 Honolulu, USA, usa, 376, 346, HI, Hawaii Gender:	Re: Word is getting out there Reply #1 - Sep 22^nd, 2008 at 9:16pm Great news! Thanks for sharing! ;
Back to top	"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis IP Logged

carpeDIEM New Poster Offline Life just got tougher. Posts: 18 Los Angeles, California 90042 Gender:	Re: Word is getting out there Reply #2 - Sep 26^th, 2008 at 11:55am Amen, i felt so scared when imy nurses would ask me, the patient, "what is moya moya?" i would be like "i dont know you're the nurse you tell me."
Back to top	IP Logged

amy1992

New Poster

Offline

I love YaBB 1G - SP1!

Posts: 25
Columbia, USA, MO, Missouri
Gender: female

Re: Word is getting out there
Reply #3 - Sep 26^th, 2008 at 4:11pm

I agree when I go to the ER for pain. They always say what is moyamoya, what is it about, what does it do? I agree, "your the dr or the nurse you tell me!" It's very frustrating to have them say let me go read about it. And they go read about it on the internet. They basically say what do you want? What kind of pain meds do you want? So I am basically telling them what to give me for the pain. I would love to walk in and the nurse or dr. to say yes I knoe what it is and here, this medication will work. Lets get the work out! I explain all I know to everyone I know! I give out moyamoya braclets to ALL my family members and they wear them ever day, even the little kids. So lets talk to everyone about it. We can also help get the word out! Much love to EVERYONE on this site.xoxo

IP Logged

Skay

Junior Poster

Offline

I love YaBB 1G - SP1!

Posts: 87
Evansdale, USA, usa, 323, 119, IA, Iowa
Gender: female

Re: Word is getting out there
Reply #4 - Sep 27^th, 2008 at 11:30pm

Yes, the word is getting out. I had a TIA in March and seen my neurologist at the University of Iowa this week. They are doing a study of MM and asked if I wanted to do it. I jumped at the chance.The University of Washington in St.Louis is also involed. It is a five year study of the blood flow to the brain. When I had my TIA the local doctors still had no idea what mm was and I had been in two years ago for the same thing. Just wanted to put my 2cents worth in.

Take care, Sharon

IP Logged

DHuynh New Poster Offline I love YaBB 1G - SP1! Posts: 13 charlotte, USA, NC, North_Carolina	Re: Word is getting out there Reply #5 - Oct 15^th, 2008 at 1:45am When my mom was admitted to the hospital.... nurses would search on the internet to see what moyamoya was. How can you treat a condition you know nothing about? Yes they do need to be educated.
Back to top	IP Logged

Becky

Old-Time Poster

Offline

Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: Word is getting out there
Reply #6 - Oct 15^th, 2008 at 6:15pm

Mine was detected by a nuroradiologist who just got back from a seminar that taked about how to detect MM. My nuroloest at the time(I have a diffrent one now) Looked at the same films and said it was impossible since i am not Asian. I asked for a second opinion there and never went back to that nurologist. My second opinion was from the Mayo clinic in MN and the nurologist looked at the same film and didn't look at my history and said MM. He later looked at everything and I had my surgey 2 months later (I was on Coumindan so i had to wait, he wanted to have it right away but you cant be on coumidan and have surgery).
It is great to here they are talking about it!!!!
Becky

What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic

IP Logged

Pages: 1

‹ Previous Topic | Next Topic ›

« Home

‹ Board

Top of this page

There are user(s) in the live chat room. Go there now...

DISCLAIMER: All information contained on this web site is for informational purposes only. It is in no way intended to be used as a replacement for professional medical treatment. moyamoya.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site. All information taken from the internet should be discussed with a medical professional!

Moyamoya.com Forum » Powered by YaBB 2.4!
YaBB © 2000-2009. All Rights Reserved.

©2003-2018 Web Vision Enterprises LLC All Rights Reserved. All information on this site is protected by international copyright laws. You may not re-distribute any information from this site without written permission from Web Vision Enterprises LLC and the webmaster of this site. Violators will be prosecuted.

You may view our privacy policy and financial disclosure statement here