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DJ YaBB Administrator Offline Been there, done that... Posts: 721 Wichita, KS Gender:	Uninformed media Oct 30^th, 2005 at 4:01am Seems the media from New Mexico needs to see this site... http://www.kobtv.com/index.cfm?viewer=storyviewer&id=22492&cat=4HEALTH
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Shan

Old-Time Poster

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MM Survivor ~ May 27,
2005

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

Re: Uninformed media
Reply #1 - Oct 30^th, 2005 at 5:02am

DJ,

Thank you for sharing. Interesting...wow...Could this truly have been the very first extracranial-intracranial bypass in New Mexico? What was interesting is that I saw a neuroradiologist here before I was officially diagnosed with MM, and he recommended that I go to Texas to have surgery. (He said either a stent, angioplasty or bypass). I was just wondering if she was in Texas and then went to NM for the sugery! I guess she could just be a Texan living in NM. Smiley

Nonetheless, very interesting. Hopefully, they (especially the woman) finds this site. (I've emailed a comment to the television station).

Take care,
Shan

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« Last Edit: Oct 30^th, 2005 at 5:03am 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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cass/kate

Experienced Poster

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Daughter Kate has moyamoya.

Posts: 247
Dallas, USA, usa, 270, 251, TX, Texas
Gender: female

Re: Uninformed media
Reply #2 - Oct 30^th, 2005 at 10:41am

DJ -

You are so right. I just replied to this article myself. I really feel sad that a Texas doctor sent a patient to New Mexico. Not that I am feel badly that the patient was helped there - that is great - but that once again Texas doctors seem to know so little about the disease.
Sure shows we need to keep on getting the word out, doesn't it?!

Hugs, Smiley

Cass

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Lore

MM.com Benefactor

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My brother Kevin (Cubbie)
has Moyamoya

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

Re: Uninformed media
Reply #3 - Oct 30^th, 2005 at 10:51am

DJ,

Well that is very interesting. I too wonder if anyone who has visited MM.COM is from New Mexico and where they had surgery. I do find this odd.

I guess I found it odd that someone from Texas was referred to New Mexico and it is the first bypass in New Mexico or is it the first bypass in New Mexico on a Moya Moya patient? Where I'm confused is why the individual was operated on in New Mexico when I know there are surgeons in Texas who have performed bypass surgery on others diagnosed with MoyaMoya?

The woman, I would think, is from Texas or somehow either went to Texas for treatment or talked to the Texas doctor. I suspect she physically visited the Texas doctor?

When Kevin was diagnosed with MoyaMoya, one of the first things I did was to search the net for info. This site was at the top of the search engine. That's why I find this not only interesting but somewhat baffling.

Shan, let us know if you hear back from the TV station. I'm curious to know the sequence of events for the woman and why New Mexico.

The blurb from the TV station is all that is. A blurb. The details are missing.

Lore

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"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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cass/kate

Experienced Poster

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Daughter Kate has moyamoya.

Posts: 247
Dallas, USA, usa, 270, 251, TX, Texas
Gender: female

Re: Uninformed media
Reply #4 - Oct 30^th, 2005 at 10:59am

DJ and Lore-

I found this rether sketchy also. Sounded to me like the woman went to a doctor in TX who then sent her to NM.
Sort of made it sound like this was the first bypass surgery for mm - in NM, at least, if not ever!

I asked them a number of questions, and hopefully will hear back also. Hope you do to, Shan. I will be interested to hear what they say.

Lore, we researched everything we could on the internet, and well as calling all the hospitals here in Dallas and in Houston, and many others in the US. Our info pointed us straight to Dr. Steinberg at this time. I saw/heard nothing about NM.

Cass

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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: Uninformed media
Reply #5 - Oct 30^th, 2005 at 11:05am

Cass/Kate,

Your post wasn't up when I started my post. I guess I didn't realize how unknown MoyaMoya is in Texas. It's just like Ohio. It is extremely difficult to find a neurosurgeon here that has ever heard about Moyamoya. When they do hear it, they just diagnose and adios. That's why Kevin finally ended up at Stanford because Dr. Steinberg, being an expert in MoyaMoya, knew Kevin needed surgery immediately.

We still have difficulty with it. I carry the MoyaMoya.com front page with all the links and the NINDS and NORD papers with me. When I have to take Kevin to the ER or even another doctor, I hand them the papers. I also leave the papers in public places hoping to educate folks. Perhaps the person who picks it up will spread the word or at least be curious enough to come to this site. You hit it on the nose when you mentioned that this article reminds us of how much education is still required.

Sorry, I got off the track here. Let me know if you also hear back from the TV station.

Hugs,

Lore

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"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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Shan

Old-Time Poster

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MM Survivor ~ May 27,
2005

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

Re: Uninformed media
Reply #6 - Oct 30^th, 2005 at 11:33am

I will definitely let you all know if KOBTV returns my email. I hope they also take the time to visit this site themselves! I think they would be shocked that we even exist! Shocked

When I did my interviews with our local news (FOX and NBC affiliates), I told the reporters about this site, and they actually visited this site! ; Grin

Seemed like they were trying to find as much info online as possible. It was a little after the Las Vegas Reunion, so to even hear that there was a reunion of some sort emphasized the fact that there is a significant amount of us with this "rare" disease...

I sure hope they do get back to me. Better yet, it would be great if they could do a follow-up story or post my message in their paper which includes this website so the woman can also find us!

Anxiously awaiting,
Shan

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« Last Edit: Oct 30^th, 2005 at 11:34am 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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cass/kate

Experienced Poster

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Daughter Kate has moyamoya.

Posts: 247
Dallas, USA, usa, 270, 251, TX, Texas
Gender: female

Re: Uninformed media
Reply #7 - Oct 30^th, 2005 at 3:19pm

Shan -

The would be great. The more who know the real facts, the better. Let us know if you get a reply.

Lore -

When Kate was diagnosed, everything moved SO fast. We were on a plane to California less than a week after her diagnosis. We were so lucky to find Dr. Steinberg as quickly as we did - had many friends and neighbors on the internet searching with us. It was actually a good friend who found mm.com.

While Kate was at Stanford, we had every doctor she had seen in the past year and a half sent all the reports of her surgeries and recoveries. That would be 5 - 4 in Texas and one in Oklahoma. I also sent nightly reports on her (it became my diary of her illness and of the trip and surgeries) to 62 people in 11 different states. Hopefully, this will also help get the word out. I have already had six inquiries re mm - and have given them the web site as well as Dr. Steinberg as a contact. We just have to keep on keeping on !!

Later,

Cass

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Lore

MM.com Benefactor

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My brother Kevin (Cubbie)
has Moyamoya

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

Re: Uninformed media
Reply #8 - Oct 31^st, 2005 at 1:02pm

Hi DJ, Shan and Cass,

I was on the Guest Book page and found where Cindy West had surgery 3 years ago in Pennsylvania by a Dr. Howard Yonas of UPMC, Pittsburgh who moved to Albuqyerque, New Mexico. Perhaps he is the one who performed the bypass surgery. I found this interesting and I am curious to know who the doctor in NM is. Cindy spoke highly of this doctor and was disappointed when he moved from Pennsylvania to New Mexico as she needed another surgery and wanted him to do the surgery. She ended up in Cleveland, Ohio for her second surgery.

Again, I am curious as to who the doctor is who performed the bypass in New Mexico.

Hopefully, we'll find out soon.

Lore

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"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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Lore

MM.com Benefactor

Offline

My brother Kevin (Cubbie)
has Moyamoya

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

Re: Uninformed media
Reply #9 - Oct 31^st, 2005 at 1:10pm

Hi All,

If I could only get my act together!

This is the doctor listed at the bottom of the news article. I missed it the first go around. So I suspect he is the one who performed the bypass. He is the same doctor that Cindy, on the Guest Book page, mentioned so he has done previous bypass surgery on moyamoya patients just not in New Mexico. He did bypass in Pennsylvania at UPMC Pittsburg on Cindy.

Cass - WOW!! you have notified a lot of people about moyamoya. You're right, "keep on Keepin on" Smiley

Lore

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"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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Becky

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

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

Re: Uninformed media
Reply #10 - Nov 1^st, 2005 at 9:25am

I just wish the nuroologest in the world would start looking at this syndrom more seriously. When I was "diagnosed" it was sugested by the nuroRadiologest that had just done an angio and saw the "puff of smoke" and said we should ask my nurologest about MM. When I asked my old nurologest about MM she said I coulnd't have it because I am not asian, but If I wanted a second opion I could go to the mayo clinic but she didn't think they would say I had MM. Well Here I am bypass from the Mayo for MM later and a new nurologest that believes MM isn't just for Asians. The surgen at the Mayo sugested this web sight to look up more info on MM. and Every time I sugest it to someone they are amazed at the info on here. I just wish there was a way we could make doctors know that MM is out there. Smiley

Becky

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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

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