Tuesday, September 15, 2009
What To Expect When Your Expecting MoyaMoya
My husband collapsed 2 months before our wedding and was diagnosed with MoyaMoya. I quickly learned about this rare disease and researched doctors from around the nation, who could best treat his condition. So now 5 months later we are treating his MoyaMoya with a surgical procedure known as an STA-MCA bypass from the renowned Dr. Gary Steinberg at Stanford Medical Center. We embark on our surgical journey to treat the condition tomorrow morning. I thought a blog on my day to day activities would archive in internet space - and help other wives, mothers, friends, sisters, and fathers understand a day by day account of MoyaMoya treatment and what they can expect.
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I don't even know if you are still checking this blog, but I thought I might try.
ReplyDeleteMy best friend just had this same surgery yesterday with Dr. Steinberg at Stanford. I was wondering how moyamoya husband has healed and progressed since the surgery? How long did healing take and if any problems from the previous strokes were better? Thank you for your time, and I hope everything has gone well with moyamoya husband since the surgery.
i just found your page and just found i haev moyamoya as well. i am set for surgery at the mayo clinic this month and am terrified as everyone is but seeing stories like this makes me feel better. i am so glad things went well for you and your husband and wanted to thank you for doing this blog.. there is so little known about his and little to find so pages like this really helps. i too am doing a blog about moyamoya and my story to help others....
ReplyDeleteHi Christy,
DeleteI know this response is a long time coming - we do hope that you are doing wonderful and that you have recovered and feeling 100%! Thank you so much for your comments, we realized at the time little was said about the journey that happens once one is diagnosed. Prayers and hugs to you!
I was diagnosed the Moyamoya disease on August 2, 2013. I had a stroke while on vacation in Las Vegas. My boyfriend called for help, and then a few minutes later the paramedics and ambulance came and they rushed me to the hospital. I spent 7 days in the ICU and 2 days on the regular floor. Now I have an appointment with a nuero-surgeon here in Minnesota. I've also got an appointment with a vascular neurologist. So I don't know what to expect and I feel scared. I've been reading about Moyamoya disease. I'm very grateful for my boyfriend. He's been my emotional support. He's been taking great care of me and coordinating my medical appointments.
ReplyDeleteHi Joy! My husband and I rarely check this blog, but came across your post. First, we know how scary it can be, but what is amazing is there is so much that can be done for MoyaMoya and this is such a curable condition!!! He was first diagnosed in 2009, and in 2013 he is surfing, skatboarding, climbing mountains and running after our baby daughter who just turned 7 months :), We will be praying for a fast recovery, but it can be terribly scary, the first days are the toughest, but my husband was up and moving around and was feeling back to his self within month. Please update us and let us know how you are doing. It is hard for the person who is supporting the moyamoya patient as well so big hugs to your boyfriend who sounds like an amazing partner!!!
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