Moyamoya disease

Posted by mamabear7116 @mamabear7116, Apr 5, 2018

My 20 month had a stroke and an aneurysm leak, and we found out he has moya moya. He had a procedure to help but it takes 3 to 6 months for it to work. Right now he has seizures and mood problems and most of all pain in his head.

Hi @mamabear7116 and welcome to Connect.
I'm tagging fellow members @sallen52 @micayla09 @rdrreed on this discussion in the hopes that they will join the conversation and share their experiences of moyamoya with you.

I can't imagine what this journey has been like for you. As a parent, we always wish we could spare our children all pain and suffering. Can you tell me more about the procedure your son had? How do you manage his mood problems, seizures and the pain? It must be such a challenge for him to understand what is going on.

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I'm so sorry I'm 49 and I got moyamoya 2 give him alot of love because moyamoya cause alot of headache Good luck and God bless!!

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Hello @yolandar

Welcome to Mayo Connect. I am sorry to hear of your diagnosis of Moyamoya, but I appreciate you adding to this discussion.

If you are comfortable sharing more about yourself: How long ago were your diagnosed? What type of symptoms do you have? What type of treatments have you had?

I look forward to getting to know you better and wish you well!

Teresa

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Watch the 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/
What is your experience with Moyamoya? Let's connect.

Liked by Lisa Lucier

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My 12 yo daughter was having headaches with tingling in her hands and face. Had an mri and an mra and was just diagnosed with moyamoya. She is having indirect bypass surgery soon. Anyone can tell me what to expect?

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@saigenicole

My 12 yo daughter was having headaches with tingling in her hands and face. Had an mri and an mra and was just diagnosed with moyamoya. She is having indirect bypass surgery soon. Anyone can tell me what to expect?

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Welcome to Mayo Clinic Connect, @saigenicole. Now that you have had the MRI and MRA for your daughter and have a diagnosis, I wanted to offer this Mayo Clinic information on moyamoya disease https://www.mayoclinic.org/diseases-conditions/moyamoya-disease/symptoms-causes/syc-20355586.

I'm hoping that members who have been part of this conversation here or elsewhere on Connect can offer their support and input on indirect bypass surgery, if they or a loved one has had this operation. Please meet @djangounchained @yolandar @mamabear7116 @unmaskingmoyamoya @amacd @howelljd @evazquez88. @hopeful33250 also may have some thoughts for you.

Is your daughter having the indirect revascularization procedure described here, saigenicole https://www.mayoclinic.org/diseases-conditions/moyamoya-disease/diagnosis-treatment/drc-20355591? If so, when will she be having surgery?

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@lisalucier

Welcome to Mayo Clinic Connect, @saigenicole. Now that you have had the MRI and MRA for your daughter and have a diagnosis, I wanted to offer this Mayo Clinic information on moyamoya disease https://www.mayoclinic.org/diseases-conditions/moyamoya-disease/symptoms-causes/syc-20355586.

I'm hoping that members who have been part of this conversation here or elsewhere on Connect can offer their support and input on indirect bypass surgery, if they or a loved one has had this operation. Please meet @djangounchained @yolandar @mamabear7116 @unmaskingmoyamoya @amacd @howelljd @evazquez88. @hopeful33250 also may have some thoughts for you.

Is your daughter having the indirect revascularization procedure described here, saigenicole https://www.mayoclinic.org/diseases-conditions/moyamoya-disease/diagnosis-treatment/drc-20355591? If so, when will she be having surgery?

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Good Morning! My daughter is having the indirect revascularization procedure on November 7th. Thank you so much for the information.

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@saigenicole

Good Morning! My daughter is having the indirect revascularization procedure on November 7th. Thank you so much for the information.

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Hi, @saigenicole – how is she feeling about this upcoming procedure?

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She is very nervous and doesn’t want to talk much about it. I wish there was another young child she could talk to.

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@saigenicole

She is very nervous and doesn’t want to talk much about it. I wish there was another young child she could talk to.

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That is understandable that she'd feel nervous, as it's a big surgery, as I understand. Would your surgeon perhaps be able to connect you with another local young person who's had the same surgery?

How are you feeling about it?

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@lisalucier

That is understandable that she'd feel nervous, as it's a big surgery, as I understand. Would your surgeon perhaps be able to connect you with another local young person who's had the same surgery?

How are you feeling about it?

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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.

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@saigenicole

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.

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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?

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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!!

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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?

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@hopeful33250

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?

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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.

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