Moyamoya disease

I will definitely ask her doctor about connecting with another young person. I am very nervous about the surgery but I have faith it will all work out. My daughter was adopted by us at 4yrs old and everything from the first time she came into our home has worked out perfectly. So I feel that this was found before she had a severe symptom and we are ahead of the game. We feel blessed in that respect.

Your attitude is wonderful, @saigenicole. I hope you do find a young person that your daughter can connect with through phone, email or in person.

Will you let me know if you make that connection?

My 12 yr old daughter had her indirect bypass surgery for moyamoya on November 7th. She did amazing with the surgery. No side effects, etc. she is able to return to school on Monday with restrictions but did amazing!!

So good to hear from you, @saigenicole. I'm so happy to know that your daughter's surgery went so well. She must be so pleased that she is feeling better and will be able to go back to school. How long was she hospitalized after her surgery?

You mention restrictions, are these dietary restrictions or are they related to activities she can engage in?

She was in the PICU for two days and discharged from there. Her restrictions included changing classes at school 10 minutes before others so she doesn’t get bumped, no carrying a heavy backpack, no gym.

Those sound like reasonable restrictions, @saigenicole.

Your daughter must be excited for her first day back to school. Will you keep in touch with Connect and let me know how she is doing?

Glad to hear about this successful surgery for your daughter, @saigenicole. You'd mentioned she felt nervous beforehand. How is she feeling about the surgery now on the other side of it?

Hello My name is Marjorie King, my sister was diagnosed with Moya Moya in 2018 after a stroke and she passed away on Nov, 28, 2019. I am trying to learn as much as I can about this Disease to Advocate and Educate as many as possible.

Hi, @mking2020 - that is a very recent loss, and I applaud your interest to advocate and educate others on this disease.

Here is some information from Mayo Clinic on moyamoya that you may find useful:

- Article on moyamoya https://www.mayoclinic.org/diseases-conditions/moyamoya-disease/symptoms-causes/syc-20355586

- Video Q&A with Dr. James Meschia, neurologist, and Dr. Rabih Tawk, neurosurgeon, Mayo Clinic specialists in Moyamoya disease https://connect.mayoclinic.org/webinar/video-qa-about-moyamoya/

I'd like to introduce you to @mamabear7116, who mentioned her toddler had moyamoya, as well as @saigenicole, who talked about her daughter being diagnosed with this disease. @yolandar @hopeful33250 @sallen52 @micayla09 @rdrreed also may have some thoughts and/or resources to share with you.

You also may want be interested to know there is a Loss & Grief group on Connect: https://connect.mayoclinic.org/group/loss-grief/.

How are you doing today, mking2020?

Hello @saigenicole,

As I recalled your last post, your daughter was to return to school last November. How is she doing post-surgery?