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teetee

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My 5 year old daughter,
Breanna

Posts: 30
Humboldt, USA, usa, 285, 148, NE, Nebraska
Gender: female

my 4 yr old daughter's first surgery is the 23
Feb 7^th, 2005 at 12:34pm

Well I just learned that Breanna will be admitted in the hospital the 21st and then the 22nd she will have the angiogram, and then the 23rd she will have the surgery. The doctor said she doesn't need to go off the aspirn prior to surgery...Is that normal??? Also, Im concerned about the angiogram. I hear it is dangerous to be under sedation and the test is serious???? Im getting very nervous about the whole ordeal. Please keep Breanna in your prayers!!

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DJ YaBB Administrator Offline Been there, done that... Posts: 721 Wichita, KS Gender:	Re: my 4 yr old daughter's first surgery is the 23 Reply #1 - Feb 7^th, 2005 at 1:43pm Tina, please check your PM's... DJ
Back to top	Adversity does not build character... it reveals it... I help my neighbor and my neighbor helps someone else. Life is a wonderful circle! IP Logged

Mar

Ex Member

Re: my 4 yr old daughter's first surgery is the 23
Reply #2 - Feb 7^th, 2005 at 2:37pm

Hi Tina,

Without a doubt you have all our prayers and support. We understand your many fears Tina and God bless ya, your little one has been through a lot in her life, but I think the only way that many of us have handled the many fears, is knowing that this disease is progressive and without the surgery, the possible outcome is much more frightening. The key is learning all you can about this disease. I’ve found that, the more you know and learn; the more comforting; and the rest comes with your own spiritual faith.

As far as the angio goes, and being off aspirin, I'm sorry, I don't know. Every mm patient has different considerations, but that's why we always emphasize a mm specialist, because they have more experience with mm the disease and it's many concerns.

Please know you're in our thoughts and prayers and we'll be here if you need us in any way. Smiley

Mar

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debs

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I love YaBB 1G - SP1!

Posts: 63
Delafield, USA, usa, 358, 107, WI, Wisconsin
Gender: female

Re: my 4 yr old daughter's first surgery is the 23
Reply #3 - Feb 7^th, 2005 at 3:19pm

Tina, I'm sorry that you are going thru all this with your precious little girl; I'm on the adult side of mm as I was diagnosed at the age of 46. Before my 1st surgery I went off aspirin, thinking that was what you're supposed to do.....after a few days, I noticed more symptoms & called Dr. Steinberg's office. I was told STAY ON ASPIRIN. The anesthesiologists know you're on aspirin (ABSOLUTELY NECESSARY TO KEEP BLOOD FLOWING) and they make adjustments with their gases & meds. during the operation. I've had angiograms around 10 times &, although they are risky, it's the only way for the dr's to have a map of Breanna's brain, where they're going & what they need to do.

I'll keep you in my prayers!!!(((HUGS))) deb

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Kath41

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SOOOO happy to have found
this website for support

Posts: 156
Kansas City, USA, usa, 297, 159, MO, Missouri
Gender: female

Re: my 4 yr old daughter's first surgery is the 23
Reply #4 - Feb 7^th, 2005 at 4:31pm

Tina,
My middle daughter had an angiogram done first at 2 months old then at 5 months old, not for mm (I am the one who suffers from this) but for a heart condition she had. She ended up having open-heart surgery at 7 months old so I know how you feel when you want to help your child. It was an over night stay because of the anesthsia but she did just fine and I will pray that your daughter will do the same. Good luck and I will keep you in my prayers
Smiley

Kathleen

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Rena Senior Poster Offline Hi, My son Tyler was diagnosed with MM in 2003 Posts: 467 , Colorado, USA Gender:	Re: my 4 yr old daughter's first surgery is the 23 Reply #5 - Feb 7^th, 2005 at 6:28pm Tyler was kept on his asprin through the surgery. I will put your family in my prayers.
Back to top	I've learned to never underestimate the impossible. -Blake Sheldon-&&There are no failures, just options tried. -Thomas Edison-&& IP Logged

mark

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I love YaBB 1G - SP1!

Posts: 86
cato, USA, usa, 468, 87, NY, New_York
Gender: male

Re: my 4 yr old daughter's first surgery is the 23
Reply #6 - Feb 7^th, 2005 at 9:35pm

Hi TeeTee,
We just got home with our son Mark from Stanford. He was kept on aspirin for the term and has to stay on it. Check with your doctors. Good luck and you are in our prayers. think very positive. We couldn't have got through this without the support of everyone on this website our family and friends.
Best of luck,
Ron

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CarasMOM

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My 11 year old Cara has
MM.

Posts: 525
Sedalia, Missouri
Gender: female

Re: my 4 yr old daughter's first surgery is the 23
Reply #7 - Feb 8^th, 2005 at 11:36am

hi....please know you are in my prayers, too. Cara has had three angiograms in her life...first one I ended up holding her right leg down for 4 hours as they said if she moved it then it may start bleeding...the worst problem was the athestologist wasn't too familiar with MM and really made her woozy...more I read about it I felt (in my opinion)...if you have an athesologist that is familiar with MM...they seem to control it to a certain point...so her second one I made sure they knew...she was fine...the third one was unbelievablely professional compared to the first two done in Phx....the third one was done at the Mayo and everyone involved was 100% aware of MM and even Cara herself said "Mom, that was so much better and I didn't even get sick...from that point on...she had no fear going into first and second surgeries." That was my main reason continuing on there...as I could see the difference in all the level of medical staff when they see MM on regular basis versus those who see it few times. Yes it is a serious test but it needs to be done so they see the arterial network and plan the surgery, have the correct preparations including extra help on hand if needed as while it shows up in the angio...it still another thing once they get into the head....but gives them an idea. I know its still scary.....but will keep you guys in our prayers and she'll do great.

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Warm Hugs and Prayers, CarasMOM (Carol)

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gotchlorine

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Our daughter, Tara, lives
with MM

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

Re: my 4 yr old daughter's first surgery is the 23
Reply #8 - Feb 8^th, 2005 at 1:32pm

Dear Teetee,

You and your family are definitely in our prayers! From a parent's perspective, it's the hardest thing in the world to watch your child go through this. Like Mar said though, the alternative is certainly much worse. And once the surgery is over, you'll all begin the healing process, and life will resume more as you knew it before Breanna's diagnosis.

Don't hesitate to lean on us for support - we're here anytime! Please keep us posted as you can, o.k.?

Smiley

from California,

Jill

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mg12061

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

Re: my 4 yr old daughter's first surgery is the 23
Reply #9 - Feb 8^th, 2005 at 4:16pm

My daughter Kahtleen had her surgeries 3 yrs ago she too was 4 at the time of diagnosis. Dr.Scott took her off asprin 10 days before surgeries and angios. I will keep your family in our prayers.It's a very difficult time but it is the beginning of a road to healing.Kahtleen had some severe strokes but has had none since her surgeries.Keep us posted.
Mary Grace

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teetee New Poster Offline My 5 year old daughter, Breanna Posts: 30 Humboldt, USA, usa, 285, 148, NE, Nebraska Gender:	Re: my 4 yr old daughter's first surgery is the 23 Reply #10 - Feb 9^th, 2005 at 2:38pm Thank you all for the advice and your prayers! I will keep you posted on how it all turns out! Thanks again.
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catlind

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I love YaBB 1G - SP1!

Posts: 1
Omaha, USA, NE, Nebraska

Re: my 4 yr old daughter's first surgery is the 23
Reply #11 - Feb 9^th, 2005 at 5:31pm

Teetee, you don't know me, but I'm a good friend of DJ's. I don't have MM, but I know him from a cluster headache board.

I live in Omaha, and I told him to let you know this as well, but I know he's out of town for the next couple of days so I wanted to post it myself.

While you are in Omaha, if there's anything at all I can do to help you out, please please let me or DJ know. You are welcome to stay at my house if you need to during Breanna's surgery. I have only had one experience with Children's Hospital here for my own 4 year old. He had a bad accident and had to be sent to Children's for an MRI. Everything I experienced there was wonderful. The staff was all very comforting and helpful. I don't know anything about the doctors themselves, but my experience with the hospital was definitely a positive one.

My email is catlind@cox.net, and my phone number is 402-884-5506. Please feel free to contact me for anything you might need.

Cat

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