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Janko Experienced Poster Offline Take baby steps...one step in front of the other!! Posts: 209 Kekaha, USA, usa, 326, 333, HI, Hawaii Gender:	The Waiting Game Feb 13^th, 2006 at 6:39pm As it says on my subject heading, it's now "the waiting game". I sent my reports and films to Dr. Steinberg last week and I'm now waiting for a reply. I'm rather anxious to find out what the outcome will be. I've just been so tired lately and have been getting headaches for the past month. I guess I just have to be patient. Jan
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kotipup

Experienced Poster

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My daughter, Daphne, has
Moyamoya

Posts: 247
Landenberg, USA, PA, Pennsylvania
Gender: female

Re: The Waiting Game
Reply #1 - Feb 14^th, 2006 at 12:08am

Jan,

I'm sure it won't be too long before you hear back from Dr. Steinberg. Probably this week, or next - at the latest. Let us know when you hear something!

Sorry to hear about your feeling tired and having headaches. I know the symptoms must make you that much more anxious to hear a reply.

If you get too worried, just give them a call. I'm sure they won't mind, and you may get some more information about when to expect to hear Dr. Steinberg's answer.

Good luck!!

Jenny

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Janko

Experienced Poster

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Take baby steps...one
step in front of the
other!!

Posts: 209
Kekaha, USA, usa, 326, 333, HI, Hawaii
Gender: female

Re: The Waiting Game
Reply #2 - Feb 14^th, 2006 at 1:00pm

Hi Jenny,

Thanks for the support!! Both you and Daphne have been an inspiration. I didn't get a chance to see the whole program that Daphne was on, but I caught the tail-end of it and had the program taped so I can watch it later. In truth, I am getting a little anxious due to my headaches and I'm starting to have some tingling and numbness on my right-side. I will keep in touch and will let everyone know the outcome of what Dr. Steinberg says.

Aloha, Smiley

Jan

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mg12061

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Posts: 946
Albany, USA, usa, 492, 84, NY, New_York
Gender: female

Re: The Waiting Game
Reply #3 - Feb 14^th, 2006 at 1:23pm

I'm so glad the process is moving forward for you but,the waiting really is the hardest.It was sometimes unbearable for us waiting for Kathleen's surgery.I think my husband was on the computer everyday.Unfortunatly this site didn't exist,it may have kept of sain had it been around then.We felt like she was a "ticking bomb".Keep us posted.
Mary Grace

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maui_ann828

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I love YaBB 1G - SP1!

Posts: 7
Maui, USA, HI, Hawaii

Re: The Waiting Game
Reply #4 - Feb 14^th, 2006 at 4:07pm

Aloha Jan
I am waiting a while for a reply from dr. steinberg too. so i feel your pain. I am starting to have headaches too. I can also feel when my blood pressure start to rise thats when my head hurts. my right arm and foot starts to get numb. I feel like no one here knows about our situation. Only ones on this site. this is the only place to express my feelings . thank you for being there.

rayann

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lsuvia

Junior Poster

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Diagnosed w/MM on 8/2005

Posts: 52
Oceanside, USA, usa, 62, 227, CA, California
Gender: female

Re: The Waiting Game
Reply #5 - Feb 14^th, 2006 at 9:32pm

Hi Jan,

I know how you feel! You are not alone. Dr. Steinberg's team will respond to you. It took about 2 weeks for me because he's been so busy. But, his team was quick to get my surgery on the books. Once his team reviews your films, the ball starts moving fast! My headaches started back up and my right side has always had some kind of numbness. Hang in there! Dr. Steinberg will get back to you.
God bless...
Lee

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Rena Senior Poster Offline Hi, My son Tyler was diagnosed with MM in 2003 Posts: 467 , Colorado, USA Gender:	Re: The Waiting Game Reply #6 - Feb 14^th, 2006 at 10:29pm Jan, My prayers are with you. I remember how hard it was waiting for Tylers results. Rena
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Janko

Experienced Poster

Offline

Take baby steps...one
step in front of the
other!!

Posts: 209
Kekaha, USA, usa, 326, 333, HI, Hawaii
Gender: female

Re: The Waiting Game
Reply #7 - Feb 14^th, 2006 at 10:48pm

Thank you all.....it's great knowing that I'm not the only one that's (is or was) on edge. Everyone is so wonderful I feel much better knowing that this group is great for support!!

RayAnn...your sister mentioned to me that you sent your films out and was waiting for a response. I definitely feel for you. I recently started having headaches again and I've been having a little numbness on my right-side. I'm having another CT scan on my brain to see if I got another bleed. Should be in a couple of days. I'm just so damned tired all I want to do is sleep. Smiley

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Janko

Experienced Poster

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Take baby steps...one
step in front of the
other!!

Posts: 209
Kekaha, USA, usa, 326, 333, HI, Hawaii
Gender: female

Re: The Waiting Game
Reply #8 - Feb 14^th, 2006 at 10:49pm

Thank you all.....it's great knowing that I'm not the only one that's (is or was) on edge. Everyone is so wonderful I feel much better knowing that this group is great for support!!

RayAnn...your sister mentioned to me that you sent your films out and was waiting for a response. I definitely feel for you. I recently started having headaches again and I've been having a little numbness on my right-side. I'm having another CT scan on my brain to see if I got another bleed. Should be in a couple of days. I'm just so damned tired all I want to do is sleep. Smiley

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kotipup

Experienced Poster

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My daughter, Daphne, has
Moyamoya

Posts: 247
Landenberg, USA, PA, Pennsylvania
Gender: female

Re: The Waiting Game
Reply #9 - Feb 14^th, 2006 at 11:08pm

Jan,

No... you're definitely not alone. I was a complete mess while waiting for Dr. Steinberg and Dr. Scott to get back to me on Daphne's imaging studies, after she was diagnosed with moyamoya.

I definitely know how it feels! Tongue

Daphne'd had major heart surgery before her mm diagnosis (for repair of a congenital defect), and even though we'd had months to prepare for that surgery, it did not even come anywhere near how anxious we were before Daphne's MM surgeries (just so you know, though, both of Daphne's MM surgeries - combined - were easier than her heart surgery. Once they were done with, it really wansn't so bad. Waiting and worrying, by far, were the worst parts!)

Let us know as soon as you hear something.

Jenny

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Janko Experienced Poster Offline Take baby steps...one step in front of the other!! Posts: 209 Kekaha, USA, usa, 326, 333, HI, Hawaii Gender:	Re: The Waiting Game Reply #10 - Feb 17^th, 2006 at 6:23pm Hi All, I just received an e-mail from Dr. Steinberg's office. From what they have told me, my MRI showed my original bleed and a right basal ganglia stroke. And my angiogram showed that I have occlusions on both right and left supraclinoid arteries. So it looks like surgery for me. Thank you all for your support!!! Aloha, Jan
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Shan

Old-Time Poster

Offline

MM Survivor ~ May 27,
2005

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

Re: The Waiting Game
Reply #11 - Feb 19^th, 2006 at 1:41am

Jan,

I also sent you an message to your personal email address. I want you to know that I am here for you, and Rayann. I know we seem so "isolated" being so far away from the medical attention that we need, but the main thing is that there IS help out there for us. We just need to be assertive and proactive in getting it. This site has provided us the guidance, support and strength to pursue the best medical care possible.

Please stay strong... You too are in inspiration and support to me, and I'm so glad to have gotten to know you! Smiley

You know that my family and I (and the Hawaii Moyamoya Ohana, and especially all of us here) are here for you and Alan...

Me Ke Aloha Pumehana,
Shan

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"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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gotchlorine

Old-Time Poster

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Our daughter, Tara, lives
with MM

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

Re: The Waiting Game
Reply #12 - Feb 20^th, 2006 at 3:16am

Hi Jan,

I'm glad to see you've solicited opinions from MM experts, and am anxious to hear how you plan to move forward. If it works out that you come to California, I would love to meet you, and to offer whatever support I can while you're here (we're just 1/2 hour from Stanford). Please keep us posted. I hope your headaches are liveable until you get treatment. I'll be thinking about you, and have added you to my prayers.

Warmly,
Jill

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