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http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl Moyamoya Related Topics >> Moyamoya Related Information and Support >> hello im knew i hope it is still active. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1248295238 Message started by litisia on Jul 22^nd, 2009 at 4:40pm

Title: hello im knew i hope it is still active.
Post by litisia on Jul 22^nd, 2009 at 4:40pm

hello :)
my name is Litisia and im from Israel, i had 2 surgeries at Stanford 8 month ago.
Im 33 years old and married with 3 little girls.
I hoped to find here people like me with mmd.
Here in Israel there are only 4 patients and no one had that kind of surgery.
The Doctors in Israel don’t know what mmd is.
I can't send Teressa email when I have a ? because im too shy so I hoped to find
people who had the surgery and know all the feeling & pains.
Im sorry in advance for my English.
Thank u :)
Litisia

Title: Re: hello im knew i hope it is still active.
Post by Little Luca on Jul 23^rd, 2009 at 3:55am

Hi Litisia

Welcome to moyamoya.com; if you're looking for people to share your experiences with, you are at the right place.

In South Africa I have only heard of two other people diagnosed with moyamoya and this website has been a wealth of knowledge.

Don't apologise for your english, it's so much better than my Hebrew ;)

Are you experiencing something specific that's worrying you?

Mark (Luca's Dad)

Title: Re: hello im knew i hope it is still active.
Post by Becky on Jul 24^th, 2009 at 12:48pm

Welcome back Litisia!
You have come to the right place. Was there a specific question you need advise with? I am more then happy to help.
Becky
PS: English is my first language and Istruggel with it too.

Title: Re: hello im new i hope it is still active.
Post by litisia on Jul 25^th, 2009 at 2:43pm

Thank u so much for making me so welcome here.
So as I said I had the surgeries 8 month ago …
I am having lots of headache in the surgery place.
I still can't sleep on my side.
When I'm reading I can't stand the pain.
I have had some test spect ct and it show that I still don’t have enough blood
I was told that in 6 moth I have to do it again and if it won't change I will have
To do another surgery (is someone had 3 surgeries?)
I hope I haven't ask to much
Thank u very much
Litisia

Title: Re: hello im knew i hope it is still active.
Post by Audge on Jul 25^th, 2009 at 9:04pm

Hi Litisia, my daughter had her surgeries at Stanford a year ago and I email Teresa with all of my questions. :) Don't be afraid to ask questions of them because they will have the most accurate answers for you!!! -Audrey

Title: Re: hello im knew i hope it is still active.
Post by Little Luca on Jul 27^th, 2009 at 2:48am

Litisia

I agree with Audrey, Stanford really needs to hear about your pain. I wouldn't be thinking about the third surgery, you still need to have a second one which might be your last. I'm sure it's not entirely unusual to go for a second procedure on the same side; there would never be a guarantee with any of these procedure that the blood flow would improve.

Please direct your question to Stanford and keep us updated.
Mark (Luca's Dad)

Title: Re: hello im knew i hope it is still active.
Post by Bev on Jul 27^th, 2009 at 7:45am

Don't be too shy to contact Teresa. I did and she was very helpful to me. I'm in the UK and there is not a lot known here about MM. She will be able to talk about your situation with you.