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carpeDIEM

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Life just got tougher.

Posts: 18
Los Angeles, California 90042
Gender: male

18 Year Old Stroke Survivor/MM'er
Sep 25^th, 2008 at 2:52pm

my name is carl nolasco. im 18 years old and i just recently graduated from high school last June. I was very athletic played Varisty basketball & Volleyball, & I was training for the 'o8 LA Marathon. A week after i graduated i had a hemmhorragic stroke, and i was in the CCU for 8 days, i was paralyzed on the left side of my body. I was diagnosed with MMD. I was transferred to another hospital where they ruled out moya moya said it was AV Mal, and i recently had another opinion where they confirmed it is MMD and now im goin to Dr. steinberg next month for my surgeries.

MM'er,
Carl Nolasco

p.s. im really scared looking or people to talk to, so full of anxiety...

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« Last Edit: Sep 28^th, 2008 at 8:28pm by carpeDIEM »

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MrsDeej

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My life is what I make
it....and it's beautiful!

Posts: 126
Wichita, KS
Gender: female

Re: 18 Year Old Stroke Survivor/MM'er
Reply #1 - Sep 25^th, 2008 at 4:07pm

Carl,

Welcome to our little family here!! So sorry to hear about your unfortunate situation, but seeing Dr. Steinberg, you will be in excellent care. Life does NOT end when diagnosed, we have many that can attest to that! There is so much information on this site that you and your family can read. I think it will shed alot of light on the questions that you may have.

DJ and I will be at Stanford for his follow-ups the first week of November. When are you scheduled?

Look around and ask questions if needed!! Your world may seem cloudy now, but know that you are NOT alone in this. We will do our best to help you through!!

Sincerely,
Steph

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Live everyday as if it were your last, ALWAYS say 'I love you' when leaving someone dear to your heart and NEVER go to bed angry!

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amy1992

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I love YaBB 1G - SP1!

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Columbia, USA, MO, Missouri
Gender: female

Re: 18 Year Old Stroke Survivor/MM'er
Reply #2 - Sep 25^th, 2008 at 7:08pm

I totally understand, being 18 you must be full of questions. Your world has not ended. You are going to one of the best neurosurgeons, Dr. Steinberg. I'm so glad you were finally diagnosed, so you have the surgery and you can get back to being an 18 year old. I am also going out to have surgery within a week or 2. Maybe I will see you out there. We are a big family here. I was also scared, my family is wonderful, but they don't know what I am going through and I don't know the things they are going through, so this site is wonderful because their are people on here that have family member that are going through it and people that actually have MM. So ask question, be scared, cry if you need to, it's all emotion, don't keep it all inside, believe me it will help. Keep fighting, you and your family are in my prayers and hopfully I'll see you there!!

God Bless You and Your Family

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carpeDIEM

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Life just got tougher.

Posts: 18
Los Angeles, California 90042
Gender: male

Re: 18 Year Old Stroke Survivor/MM'er
Reply #3 - Sep 25^th, 2008 at 10:10pm

Wow... ;

;

To: Mrs. Deej
I would really really love to meet Mr. DJ & you. DJ has been a huge insipration to me. I wil be up there from oct. 15 - nov. 7. Oct. 22 & 29 are my surgery dates.

To:Amy1992
Thank you for those encouraging words. Oh & trust iwear my emotions on my sleeve. & I'd love to meet you as well.

My email: carlnolasco@gmail.com

myspace: myspace.com/mrnolasco

facebook.com: http://www.new.facebook.com/profile.php?id=642173805&ref=name

AIM: Car1 Sayz

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« Last Edit: Sep 25^th, 2008 at 10:21pm by carpeDIEM »

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mc823923

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My dauaghter Annamarie
lives with mm

Posts: 83
Baton Rouge, USA, usa, 345, 271, LA, Louisiana
Gender: female

Re: 18 Year Old Stroke Survivor/MM'er
Reply #4 - Sep 26^th, 2008 at 9:06am

Hi Carl,

My daughter had her surgery at 16, she also has down syndrome, this past April. We will be at Stanford for her 6 month follow-up from at least the 20th of October until the 27th when we see Dr Steinberg. We may also be staying for the second surgery on the left side, depending on what the angio shows.

Steph, I would love to meet you and DJ if we have to stay. As for as I'm concerned DJ saved Annamarie's life with this web site. Her neurologist wanted to wait and see if she had another stroke or more seizures. Because of this site, I found Dr Steinberg. What a miracle that was.

Good luck Carl and my prayers go with you. You'll see, all will be well. Just put it in God's hands and He will take care of you.

Love and Prayers,
Margaret

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Margaret

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Lore

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My brother Kevin (Cubbie)
has Moyamoya

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

Re: 18 Year Old Stroke Survivor/MM'er
Reply #5 - Sep 26^th, 2008 at 10:28am

Hi Carl and welcome to the Moyamoya family.

You have really had a time of it and at such a big time in your life and at such a young age. Like Mrs. Deej mentioned, life is NOT over when diagnosed with MM disease.

If it helps to ease some of the unknown and anxiety, my brother, although in his 40's at the time, was a mess in terms of strokes, hemmorage etc as a result of being misdiagnosed for four years. He too went to Stanford and was successfully treated by Dr. Steinberg having two STA-MCA surgeries in May of 2005. Today, you would be hard pressed to know he has gone through so much. He can speak and is not paralyzed from the strokes and I'm here to tell you if he can come out of this and make almost a 360 degree turn around, you too can do the same. You're much younger than he.

You are in excellent hands with Dr. Steinberg and the entire Stanford MM Team. They have this thing down to a science and everything moves like clockwork. It's amazing. Plus, they are all very experienced, knowledgeable, nice and caring folks.

Remember, as Mrs. Deej said, you are not alone and we are here to support you in anyway we can so please ask any questions.

Stay strong and keep a positive attitude and I am confident you will do well.

You are in my thoughts and prayers.

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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carpeDIEM

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Life just got tougher.

Posts: 18
Los Angeles, California 90042
Gender: male

Re: 18 Year Old Stroke Survivor/MM'er
Reply #6 - Sep 26^th, 2008 at 12:42pm

Wow [again] I would just like to say that you guys are amazing. All your kind words are comforting & brought me to tears. It's just that my life seemed to be moving so fast and in a great direction. I ran for prom king & was voted 2nd runner up, my volleyball team and I were undefeated league champions and nearly went to the finals of city invitationals, I was ready to go into the real world & take on college, But then i felt like my world came crashing down before my eyes when i was diagnosed, it felt like up until now b'cuz, that i was having a horrible nightmare & i wanted someone to wake me up.

My Stanfor schedule: Arrive Oct. 12
Pre-op starts on Oct. 15.
Oct. 22 1st Surgery
Oct. 29 22nd Surgery
Nov. 7 Drive back to L.A.

To: Margaret
I'd love to meet you and your daughter. Mos Def.

To: Lore

Thank you for your prayers.....
"I can do all things through christ who strenghthens me."

I've been talking to my youth pastor alot for guidance.

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LauraB

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Seattle, USA, WA, Washington

Re: 18 Year Old Stroke Survivor/MM'er
Reply #7 - Sep 26^th, 2008 at 2:33pm

My daughter, age 17, had bilateral surgery in July at Stanford, following many many TIA's and a couple of bigger stroke events. She lost the use of her left arm for awhile, but it has come back very well, and now post-surgery you can hardly tell that she went through so much!

So have hope, know that you are not alone, and that other people your age have come through this successfully and have been able to move forward with life!

Laura

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Janko

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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: 18 Year Old Stroke Survivor/MM'er
Reply #8 - Sep 26^th, 2008 at 8:28pm

Hi Carl,

I too am a patient of Dr. Steinberg's. I was 42 years old when I had my stroke (also affecting the left-side of my body...I'm left-handed). I was in ICU for a week and went through a battery of tests to find out what caused the bleed on my brain. It wasn't after my angiogram that I was diagnosed with Moyamoya. Fortunately the radiologist reading my films recognized the MM vessels and was able to give the result that he found to my neurosurgeon (there is a God!!). I had to go through both physical and occupational therapy in order to go back to work (couldn't write or walk). I had my surgeries 9 months after my stroke and haven't had any ill effects since. I am now going on three years since my surgeries. I think you are making a very wise choice. I'm hoping after your surgery...you'll be good as new and will be active in sports again!!

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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smitty39

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Lyn, Canada, canada, 407, 383, ON, Ontario

Re: 18 Year Old Stroke Survivor/MM'er
Reply #9 - Sep 26^th, 2008 at 8:30pm

Carl

Keep up the positive attitude. I believe that being positive is atleast 80% of your recovery. I lost the use of my hand and arm 2 years ago from a stroke caused by MMD. I had my moments but for the most part I remained positive. I am only lacking coordination in my fingers now and i know I'll get that back as well. Know in your heart that you will come through this a stronger person than you were before. I know what we all have been through is a terrible thing but I can honestly say I wouldn't change anything because it has taught me so much about myself and the people around me. I've just created a "new normal" and that's okay, I kinda like the new me. Just know, no matter how positive you are there will be times when you're afraid or angry or sad. That's when you lean on those around you and take the support they offer. I know you will come through this like a superstar. Good luck

Debbie

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carpeDIEM New Poster Offline Life just got tougher. Posts: 18 Los Angeles, California 90042 Gender:	Re: 18 Year Old Stroke Survivor/MM'er Reply #10 - Sep 28^th, 2008 at 12:01pm Let me start by saying i trully do feel blessed to have this site [thanks mr. DJ]. I wish we could all meet in person & have a little Moya moya Partay! ;
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Audge

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Daughter Emily has MM

Posts: 107
Armada, USA, usa, MI, Michigan
Gender: female

Re: 18 Year Old Stroke Survivor/MM'er
Reply #11 - Sep 30^th, 2008 at 11:56pm

Hi Carl. My daugher, 13 yrs. old, just had her two surgeries in June. Everything is great so far. I think you have youth on your side.

Stay postive and just focus on the end results!!! I think it really does help to know so many people have gone through this. I really believe that we made the right choice going to Stanford and Dr. Steinberg. Everyone was wonderful.

You will be in my thoughts.

Audrey

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Helenor New Poster Offline Posts: 23 Folsom, USA, usa, 35, 148, CA, California Gender:	Re: 18 Year Old Stroke Survivor/MM'er Reply #12 - Oct 1^st, 2008 at 5:08am Hello Carl! I just came back from Stanford for scans and an appointment with Dr. Steinberg two days ago. I'm 19 right now. I wish you good luck with your surgeries, and I'll be cheering for you! You're in good hands with Dr. Steinberg. Elaine
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carpeDIEM New Poster Offline Life just got tougher. Posts: 18 Los Angeles, California 90042 Gender:	Re: 18 Year Old Stroke Survivor/MM'er Reply #13 - Oct 1^st, 2008 at 8:42pm oh, we're they follow ups to your surgery? I Live in L.A., you?
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Helenor New Poster Offline Posts: 23 Folsom, USA, usa, 35, 148, CA, California Gender:	Re: 18 Year Old Stroke Survivor/MM'er Reply #14 - Oct 5^th, 2008 at 4:59am I'm not sure if it's a follow up? I'm nearing six years since surgeries and I'm doing well. I'm from Folsom (near Sacramento, famous for the prison), but I'm going to school at UC Davis.
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mc823923

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My dauaghter Annamarie
lives with mm

Posts: 83
Baton Rouge, USA, usa, 345, 271, LA, Louisiana
Gender: female

Re: 18 Year Old Stroke Survivor/MM'er
Reply #15 - Oct 5^th, 2008 at 9:36am

Hi,

I sent you a message to your private e-mail with my phone number so you can contact me while in Stanford.

We arrive onthe 19th and will be staying in Mountain View about 6 miles from the hospital.

Hope to meet you and your family before your surgery. I will have you in my prayers. I know everything will go well for you.

Love,

Margaret

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Margaret

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srkm5482

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Sugar Land, TX
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Re: 18 Year Old Stroke Survivor/MM'er
Reply #16 - Oct 24^th, 2008 at 12:44pm

Hi, Carl1

Hope this adds to your encouragement. Our son had an ischemic stroke at the age of 3 1/2. He is now 15, going to school with his peers and doing well. One of the things I'm sure helped in his recovery (he had speech & occupational therapy for several years post-storke) was the fact that he is very active in sports - loves anything that has to do with a ball. While the stroke may have damaged the neurons responsible for sending signals to your muscles, the memory neurons are still there. Your therapists will help you with exercises to retrain your brain to instruct your body. There are many great books out there on the subject now.
Will be praying that your surgeries are successful and you have excellent recovery. Keep the faith - God's not through with you yet!
sue (kyle's mom)

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Sue (Kyle's mom)

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