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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › how does it work at Stanford?

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how does it work at Stanford? (Read 4299 times)

lynn

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how does it work at Stanford?
Mar 4^th, 2011 at 9:12pm

We have had our first phone conversation from Stanford and we are now working to get referrals and insurance permission. I am from Michigan and have six other children who will be staying home with dad while I take my son out there.

Can anybody help me with some information on how things will typically go? I didn't think to ask any questions about a timeline. Approximately how long will it be before we have the surgery? He has moyamoya that needs to be operated on in both sides of his brain. How does that work? Will it be one surgery or two? How long in between if it is two? How long before surgery will we need to arrive at Stanford? How long will we need to stay afterward?

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Lore

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My brother Kevin (Cubbie)
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Delaware, USA, usa, 419, 133, OH, Ohio
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Re: how does it work at Stanford?
Reply #1 - Mar 5^th, 2011 at 9:28am

Hi Lynn,

I can share my brother's experience having surgery on both sides at Stanford. It can be different patient to patient depending on how they respond etc. My brother wa in his late 40's when he had his surgeries in 2005 and he had stroked a couple of times and had many TIAs prior to his surgeries.

Our timeline in a nutshell was we first flew from Ohio to Stanford. My brother had three days of testing. He then had surgery on the first side and was in intensive care for a couple of days and then to a regular room in the MM wing of the hospital. I then took him back to the hotel. He was fine and we even went to dinner and then for a ride to Carmel and Monterey Bay. He had the second surgery about a week 7 to 8 days after the first surgery. After the second surgery, we waited about a week to 10 days and then he had his staples removed and we flew back to Ohio. We were at Stanford for three weeks total.

Hope this helps.

Lore

"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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MMhusband New Poster Offline Wife had surgery 1986. She is marvelous! Posts: 12 Philadelphia, USA, PA, Pennsylvania Gender:	Re: how does it work at Stanford? Reply #2 - Mar 5^th, 2011 at 1:29pm My wife's experience was very similar to previous post. She had very similar surgery at Th. Jefferson University Hospital in Philadelphia, and timeline was almost identical. She has had no strokes or seizures since surgery in 1986. Good luck.
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rusty-mtb

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Moyamoya Survivor

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FL

Re: how does it work at Stanford?
Reply #3 - Mar 6^th, 2011 at 7:47pm

Hi Lynn -
I flew out to Stanford (from FL) in 2009 for STA-MCA surgery on my right side.

The staff at Stanford were extremely helpful and responsive by phone and email to answer all my questions before scheduling my surgery. I arrived at Stanford about 10 days before my scheduled surgery. I recommend talking to Teresa...there is about a week's worth of pre-surgery testing. If all goes well, I think you would be cleared to leave a week later...check with Teresa though.

I had a second surgery to clip several aneurysms on my left side so I stayed longer than typical.

I kept a blog of my experience that may help (see 2008/2009 entries). I remember "googling" for any info I could find before I flew out there. I had a few complications after my second surgery, but I still have nothing but praise and admiration for Dr. Steinberg and his staff for allowing me to return to an active lifestyle.

http://fat-tire-network.blogspot.com/

Hope this helps. I wish your son the best of luck.

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mc823923

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My dauaghter Annamarie
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Baton Rouge, USA, usa, 345, 271, LA, Louisiana
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Re: how does it work at Stanford?
Reply #4 - Mar 7^th, 2011 at 4:45pm

Lynn,

My daughter only had one at a time 21/2 years apart. We actually just had the second one in Nov of 2010 and are returning for follow-up in May. I do know however that the surgeries are typically 1 week apart if they are doing 2 at the same time. Annamarie had a week of testing before surgery and we stayed about 10 day after for a follow up appointment with Dr Steinberg. Because she was a pediatriac patient the first time she had desolving sutures. She had staples for the second because she was 18. She returned to school as soon as we arrived home both times, which was 2 weeks to the day after surgery. We were told if we lived in CA she could have returned the next week. Bob is very helpful if you need to find a place to stay, they do have hotels they work with that will give you a discount. You may even be able to get in to the Ronald McDonald house, we did for the stay after surgery the first time which really helped with expenses. Annamarie is on Medicaid so it took us 3 months to get the aproval for her first surgery. However, it only took 3 weeks for the second one. Which was good because she was so much worse before the second one. Keep us informed as to how things are going. Will keep you in my prayers. Good luck with everything.

Margaret

Margaret

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