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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › Kelsey's mri reports, help me figure this out!!!

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Kelsey's mri reports, help me figure this out!!! (Read 4639 times)

FYRMOM911

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Kelsey's mom

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Miamisburg, USA, OH, Ohio
Gender: female

Kelsey's mri reports, help me figure this out!!!
Apr 30^th, 2004 at 1:42pm

Here we go, looks like we are in for an adventure of her life time. The pediatricians in Dayton, Ohio are clueless about this, and the Childrens Hospital where we had the MRI's does not list Moyamoya as a topic they specialise in. But we have to go for more tests, what can I do to speed this stuff along ???!! I'm starting to get fed up with the waiting.

Stroke 10-26-2008. MM Surgery 12-30-2009.

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STrantas

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MoyaMoya Survivor Since
2003

Posts: 1154
Philadelphia, USA, usa, 490, 122, PA, Pennsylvania
Gender: female

Re: Kelsey's mri reports, help me figure this out!
Reply #1 - Apr 30^th, 2004 at 7:20pm

The best thing to do is call Dr. Scott or Dr. Steinberg first thing in the morning and make an appointment as soon as possible. They are very quick to respond. Unfortunately the waiting is the worst part, but there's only so much you can do to get tests done really fast. The other thing you can do is to go to your local doctor and ask about an angiogram. They will need to run that test anyway, so maybe you can get it done before your appointment with Dr. Scott or Dr. Steinberg.

-Shari

« Last Edit: Apr 30^th, 2004 at 7:24pm by STrantas »

A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04

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PatM

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Woodcliff Lake, USA, usa, 498, 109, NJ, New_Jersey
Gender: female

Re: Kelsey's mri reports, help me figure this out!
Reply #2 - May 3^rd, 2004 at 8:11am

Frankly, I hate to disagree with anyone, but I think the best thing for you to do is to have Kelsey's angiograms and MrI's e-mailed to Dr. Neil A. Feldstein at nfa6@columbia.edu. He is extremely experienced and knowledgeable. He is a pediatric neurosurgeon at NY Presbyterian......he is a colleague of Dr. Connolly, my neurosurgeon, and he will, hopefully agree, based upon my e-mail to him yesterday, to sit on the Board of the Moyamoya Foundation---Helping Hands, Caring Hearts". If you need a place to stay, I am 25 miles from NYC and have plenty of bedrooms...you can stay with me and I can drive you in for the appointment. DR. Feldstein has done more than 70 moyamoya surgeries. I have the utmost faith in Dr. Connolly, and he has the utmost faith in Dr. Feldstein. Let him know, when you e-mail him, that Patti Martin referred you to him and that you need to see him asap....Don't wait....call me and then just get in the car, get directions from MapQuest , and let me know when you will be here......Think only of Kelsey.........and, act fast......Pat

"A life is not important except in the impact it has on other lives."...Jackie Robinson&&Worry looks around....Faith looks up......

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PatM Experienced Poster Offline Posts: 229 Woodcliff Lake, USA, usa, 498, 109, NJ, New_Jersey Gender:	Re: Kelsey's mri reports, help me figure this out! Reply #3 - May 3^rd, 2004 at 8:12am woops---I was typing to fast----Dr. FEldstein is NFA6@COLUMBIA.EDU. sORRY pATTI
Back to top	"A life is not important except in the impact it has on other lives."...Jackie Robinson&&Worry looks around....Faith looks up...... IP Logged

PatM Experienced Poster Offline Posts: 229 Woodcliff Lake, USA, usa, 498, 109, NJ, New_Jersey Gender:	Re: Kelsey's mri reports, help me figure this out! Reply #4 - May 3^rd, 2004 at 8:14am OH MY....I AM REALLY MESSING UP THIS MORNING. DR. FELDSTEIN IS NAF6@COLUMBIA.EDU aGAIN, ACT FAST......pAT
Back to top	"A life is not important except in the impact it has on other lives."...Jackie Robinson&&Worry looks around....Faith looks up...... IP Logged

Nancy_N.

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My daughter Mandy Has
Moyamoya

Posts: 664
Jasper, USA, usa, 436, 230, GA, Georgia
Gender: female

Re: Kelsey's mri reports, help me figure this out!
Reply #5 - May 3^rd, 2004 at 1:44pm

Fyrmom911,
I think you need to read alot of the old archive storys and not so long ago testimonials and make your own decision as to who you think is the best for your situation because Dr. Steinberg holds seminars and educates other doctors in the country on MM he is one of the best if not the best in the world he has done over 200 of these surgery's the more experience the better! He will get back to you quickly we sent our films overnight and they called in a day. Good Luck!
Nancy

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PatM

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Woodcliff Lake, USA, usa, 498, 109, NJ, New_Jersey
Gender: female

Re: Kelsey's mri reports, help me figure this out!
Reply #6 - May 3^rd, 2004 at 1:52pm

Respectfully, Nancy, I have read alot of information, both on this website and in other places about Dr. Steinberg, Dr. Connolly, Dr. Feldstein, Dr. Scott, and a myriad of other doctors. I do not make these suggestions lightly. As you know, a 2nd or even 3rd opinion, and actually meeting the doctors, if possible, face to face, is crucial in the process of making an intelligent, well informed decision. That is all I am suggesting and certainly, do not wish to offend any of us on the website, nor any of the good doctors......I am alos offering to open up my home to those in need to see Dr. Connolly or Dr. Feldstein and offering a ride to and from the hospital and doctor's appointments, or a ride from the airport to my home, etc. Best Regards, PatM-----hope to see you in August.

"A life is not important except in the impact it has on other lives."...Jackie Robinson&&Worry looks around....Faith looks up......

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joeblack357

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I love YaBB 1G - SP1!

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Groton, USA, CT, Connecticut
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Re: Kelsey's mri reports, help me figure this out!
Reply #7 - May 7^th, 2004 at 9:39am

Sorry to here that you are having such problems first of all, and I wish you luck. The very computer you used to find this site is your best tool to moving this along quickly. Line up a second opinion as soon as possible. Through my research I found that there is a very good neurology department there in OH with you in Cinicinatti (?), including a doctor that specializes in Moya Moya. Take a trip up there, give a call, email the doctor. Sorry but after a 2 hour search I can't find the link, I think it's the University of cincinnati.
Joe

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