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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:	Waiting Finally Over Feb 23^rd, 2006 at 1:59am Hi All... I guess my wait is finally over. All I have to do is confirm my surgery date with Joli (Dr. Steinberg's nurse). It looks like my surgeries are scheduled for April 12th and April 19th. I'm actually looking forward to having the surgery done. Hopefully it will help alleviate the headaches. Thank you all for the support!!
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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: Waiting Finally Over
Reply #1 - Feb 23^rd, 2006 at 3:38am

That's wonderful news Jan! Hopefully it will be easier knowing your surgery dates than playing the waiting game. We're ready for you here, and can't wait to meet you, your mom, brother-in-law and (maybe) your boyfriend!

Hang in there, knowing that you'll be in the best of hands, and keep asking questions, o.k.? There are so many here who have traveled this road, and you'll have your MM family to lean on for support and experience.

Until we talk again . . . Smiley

from California,
Jill

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Shan

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MM Survivor ~ May 27,
2005

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

Re: Waiting Finally Over
Reply #2 - Feb 23^rd, 2006 at 10:19am

Aloha Jan,

Well, I'm so glad that you have finally received confimation of your diagnosis. I know the not-knowing and waiting wasn't easy. Is Alan going up with you? I wish I could fly up with you to see you through this, as I know you must feel very anxious. Did you let your sister know? Please Jan, call/email me and let me know if there is ANYTHING, absolutely anything, that I can for you and your family! I'm just a phone call away!!!

I know you have the fighting spirit and will get through this....you are in good hands.

Me Ke Aloha Pumehana,
Shan

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« Last Edit: Feb 23^rd, 2006 at 10:19am 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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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: Waiting Finally Over
Reply #3 - Feb 23^rd, 2006 at 11:47am

I can't believe I'm actually excited about having surgery. Smiley

I guess it's going to be better than the hell I'm going through now. When I go to Stanford, it might be just my mom and I, my brother-in-law may not be able to make it with us after all. I'll be really happy if Alan (my boyfriend) will be able to join me during the last week of my stay. Unfortunately, he will not be able to make the trip with me due to school and work. I know I'll be in good hands. Of course, more than anything, I have to trust the "Man Upstairs" I know he will pull me through with flying colors. Smiley

Aloha,
Jan

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Everything is not just black and white. Open your eyes, see what the world has to offer....

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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: Waiting Finally Over Reply #4 - Feb 24^th, 2006 at 2:11am I made an error on the dates of my surgeries. I thought it was going to be on April 12th and 19th. I received a call from Stanford this afternoon to confirm the dates. It it now set for April 19th and 26th. I can't wait.
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moody Experienced Poster Offline In all the thing I lost I miss my mind the most. Posts: 207 richmond, USA, VA, Virginia Gender:	Re: Waiting Finally Over Reply #5 - Feb 24^th, 2006 at 3:54pm Good luck Jan,
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Rena Senior Poster Offline Hi, My son Tyler was diagnosed with MM in 2003 Posts: 467 , Colorado, USA Gender:	Re: Waiting Finally Over Reply #6 - Feb 24^th, 2006 at 11:35pm Good Luck, my prayers are with you.
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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: Waiting Finally Over
Reply #7 - Mar 3^rd, 2006 at 12:18pm

Hi All....

I guess all my tests have been scheduled before my surgeries. I have a Xenon scan on 4/14, and MRI on 4/16, and a SPECT on 4/17 & 4/18. I have another test on 4/18 not sure what kind. I couldn't hear what Maria said. Will find out when she sends my schedule. I'm still looking forward to the surgeries, but I think some anxiety has set in. I still feel really good about what's going to happen. I know I am in very good hands.

Smiley

Aloha,
Jan

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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: Waiting Finally Over
Reply #8 - Mar 3^rd, 2006 at 2:14pm

Hi Jan,

I'm glad to hear that your tests are scheduled. It puts you one step closer to getting here and taking care of the whole thing!

That last test is probably the neuropsych test. It's a 2 - 3 hour test where you sit with someone and they ask you a battery of questions. You also have one at your 6-month post-surgery follow-up, and they compare the two tests. Nothing invasive, but I understand it's a barrel of monkeys (not!). I'm sure that those who have been through it will share their insight with you.

Hang in there, my friend. The hardest thing now will be the waiting. I'm sure anxiety is a factor, but try to keep yourself at peace. You're doing the right thing, and a few weeks from now, you'll be on the road to recovery, and not worried about your risk of stroke.

Talk to you soon!

Smiley

Jill

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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: Waiting Finally Over
Reply #9 - Mar 3^rd, 2006 at 6:13pm

Hi Jill,

The last test is the nuero-psych test. I wasn't sure what she told me. It was rather muffled. All I know was
Maria told me it was going to last approx 3 hours. I guess now that I'm actually counting down my days, I'm getting a bit excited.

My sister comes home from Maryland this weekend. She is going to take a look at the DVD that Stanford is sending on the surgery. She works for St. Mary's Hospital in Maryland. I'm so happy she's coming home. It's her first trip home since moving to Maryland two years ago.

Thank you for talking with me earlier. It helped to calm my nerves.

Me Ke Aloha Pumehana, Smiley

Jan

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Everything is not just black and white. Open your eyes, see what the world has to offer....

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tiomasai

Experienced Poster

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Arriba Arriba!

Posts: 246
Queens, NY,
Gender: female

Re: Waiting Finally Over
Reply #10 - Mar 3^rd, 2006 at 7:50pm

Hey Jan:

So glad to hear that everything is finalized for you. I know getting everything organized before your surgeries is tolling, and the waiting is hard, but you're gonna do great.

I am sure everything will work out for you - let us know if you have questions or want to calm nerves beforehand. Keep us updated and know that we'll be thinking of you.

Oh! And the neuropsych test - have never wanted to tear my hair out more, but if you antagonize the testers like I did, it can be quite enjoyable. Wink

Hugs,
Trina

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Shan Old-Time Poster Offline MM Survivor ~ May 27, 2005 Posts: 849 Honolulu, USA, usa, 376, 346, HI, Hawaii Gender:	Re: Waiting Finally Over Reply #11 - Mar 14^th, 2006 at 10:51pm Hi All, Can anyone please explain what the nuero-psych test is? Thank you... Aloha, Shan
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louise_and_Lydia

New Poster

Offline

my daughter Lydia is 1
and diagnosed with MM
2002

Posts: 33
Swansea, United_Kingdom, europe, 150, 229
Gender: female

Re: Waiting Finally Over
Reply #12 - Mar 15^th, 2006 at 9:21am

Hi Shan,

Dont know if its any different in States but Lydia has just come back from London after having a full range of MM tests,inc another MRI and a full catheter Angio etc, the next test she is due to have is important for children with MM who may have cognitive problems in school.This will be a neuropsychological assessment: this looks at learning and thinking skills, which may be affected in some children who do not have more obvious problems.

As to its role in adults I am unclear

Just a little thought from the Uk

Lou

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love and hugs Louise & Lydia

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