Thank you for sharing your story and for everyone whos also commenting on their experience. I have moya moya disease and will be undergoing the brain bypass soon. It's comforting and also distressing to read about everyones different experience. I can only put it all in God's hands to guide my neurosurgeons hands to skillfully complete my surgery without incident...lol
You are so lucky that you could talk after your left brain surgery. Within 2 days after my surgery I lost my ability to speak. Had to relearn how to speak - took about 3 months to get my speech back. But, I'm still alive, so all is well. Glad you are doing so well.
Thank you for posting and sharing your story. My son is 24yrs and was diagnosed when he had his second stroke. He never had any surgery but daily aspirin. Now we found out that it has progressed over the years that he has to have surgery. I was scared but your updates about the surgery is a huge relief. I pray that everything turn out fine.
Oh my god, I’m so glad I found your videos. I was diagnosed 1 Month ago, because I had a little stroke. In 2 days I’m undergoing surgery and your videos are helping me to be a little bit prepared for what’s coming and to have less fear. If I asked my doctors how I’m going to feel after surgery they just said that they are just operating and never had to undergo this surgery themselves😅 so it’s nice to hear that everything went well for you. Hope you are doing good!
Thank you for your comment! I’m doing well. :) I’ve meaning to do an update video for a long time! I should definitely get around to doing that soon. If you’re on Facebook, check out the group “Moyamoya Disease (Rare Brain Disease)” - I’m in a few Moyamoya groups, and this one seems to be the most active so far. Good luck in your journey! Keep me updated! -Katie
Katie S. So surgery went well, but after that I had some problems with my blood pressure and then I got fever and had an allergic shock from the antibiotics. I spent 4 days in the ICU and hopefully I can leave the hospital on monday. But I’m feeling well, I have nearly no pain, so that’s good.
Katie S. I was send home for Christmas, but then I had to come back, because my scar still is infected and from the pain medicine I got agranulocytosis. Since January 1 I’m isolated, because the risk of an infection is really high, but I’m feeling well, so hopefully it’s getting better soon
My mother just went for surgery for moyamoya in may in south Africa and it was never been done in the country before so she was the first person in south Africa to have the surgery done by Doctors who didn't know what they were doing but thank god everything went well I'm so happy to see you score my mother's is ear to ear so hers is big and long ❤
I don't have Moyàmoya but I work in healthcare and I like to find out about diseases and patient experiences. Your journal was great. I kind of wish you'd keep uploading because you speak clearly and coherently and you'd make a great vlogger.
I found your videos to be wonderful. I was diagnosed in December 2009 and had two surgeries, both following year. I was told that I couldn't have a stent put in because my arteries are narrowed and twisted like a cork screw. So all they could do is lay my main arteries on my brain to get more oxygen to my brain. Do you have chronic headaches? I do. I found that Amitriptyline is the only thing that takes care of them. I had two mini strokes, that's how they found out about mine. I was 37 at the time and the hospital didn't believe me when I told them I was having a stroke! They sent me home with ibuprofen! Lost a companion of 11 years but I got the use of my arm back :) I'm a happy lady! I'm glad you're doing great as well. Take care! Thank you for sharing!
Hi Amy -- Thank you for your comment! :) Glad to hear that you are doing well. When it comes to chronic headaches, I actually noticed that my headaches improved after I had my surgery -- and I've only had one migraine since my surgery, too. I think the increased blood supply made a big difference. I hope you only continue to get better and better! Best of luck to you! Katie :)
Hi I just happened to come across your video. I just was diagnosed with MoyaMoya diseases on January 3,2013 and I am having surgery on Feb. 12th 2013 @ Stanford University. So I'm a little nervous it was helpful to see someone else's experiences. I guess I just wanted to say thanks, and I hope your recovery goes well!
Hi Katie, im Candacd i am almost 2 month out of surgery. i found out that i had moyamoya about 2 and half months ago. your videos have helped me alot. i dont feel so alone now. you and i have matching scars lol i have tbe bypass on my left side as well but will need the the right done in a few months to a year
Hi Kath.. I'm tryphena from India. Had a Moya Moya surgery a week ago. Surgeon said I might need another one on the left side as well in the next six months. Keep praying for me as well.
My daughter was diagnosed with moyamoya 10 years ago following a stroke. She has had arterial bypass surgeries on both sides and is holding her own but her surgeon is at Harborview in Seattle and her regular doctor never heard of moyamoya so we haven't had a lot of information on the disease. 10 years ago I don't think a whole lot was known about it. I just recently got online (thanks to my 10 year old grandson) and to my amazement-we are not alone. We just haven't been well informed by the doctors at all on what to expect as far as a normal life goes. I would like to know what information there is on the genetic aspect as I used to get debilitating migrains as a child and my mother died at 46 from a brain aneurysm back in 1976. Think it's all moyamoya? I'll keep reading every thing I can and bless you all for sharing your stories.
Hi Judy, Thank you for sharing your story. I hope your daughter is doing well :) You know, I've heard there may be a genetic component to Moyamoya disease, but no one seems to have a definitive answer. I think Moyamoya is really under-diagnosed because the test used to diagnose it (cerebral angiogram) is so invasive, and the symptoms are really non-specific and could be attributed to so many other conditions. I'm glad we have TH-cam as a way to connect to one another and talk about our experiences! :) All the best, Katie
Hi, thanks so much for your comment! BEST OF LUCK with the surgery - everything will be fine. I've only heard and read good stuff about Stanford. I'm glad I could help in some way! Let me know how your surgery goes! -Katie-
I just had the surgery and had a stroke during the operation, had to go to rehab to learn to move the left side of my body. This in the last two weeks. It hasn’t been easy.
Would you do a video of how your doing now? I'm just getting started on the journey and I'd like to see how your long term progress is? I actually had no symptoms, but I had a hemorrhagic stroke 2 months ago, that's how they ended up doing the tests and diagnosed me. I have been thinking about your story and I'd love to see an update on you! Thanks for putting this out there for all of us going through this!!
Hi Lindsey :) Thank you for your comment. I’ve been meaning to do an update video for years! Overall I’m doing really well and my symptoms are minimal on the right now. I have yet to experience symptoms on the left side of my body, but I do experience issues with word finding when I talk (especially if I’m anxious), but I’m not 100% convinced that it’s all Moyamoya-related. I will definitely make an update video soon, but I might have to do it on my phone since I haven’t been able to find my camera for awhile! ;-D
Katie S. thanks a lot for your answer it s relieving but as you knw numbness and dizziness sometimes and worries coz I have kids thanks for asking I appreciate it.
I actually have surgery this Tuesday coming up I believe is june 3rd it actually relieves me that I will be ok. I just found out I had moyamoya like 2 weeks ago I did had strokes and thats when they found out on the anguiogram the second time on the right side though.
You look good after a week. My mom just had it. And. Sometimes she get stock. When she talks. But she have. Both sides. And she have deabetes. She barely walk. She so swollen.
Thank you for sharing your story and for everyone whos also commenting on their experience. I have moya moya disease and will be undergoing the brain bypass soon. It's comforting and also distressing to read about everyones different experience. I can only put it all in God's hands to guide my neurosurgeons hands to skillfully complete my surgery without incident...lol
You are so lucky that you could talk after your left brain surgery. Within 2 days after my surgery I lost my ability to speak. Had to relearn how to speak - took about 3 months to get my speech back. But, I'm still alive, so all is well. Glad you are doing so well.
Thank you for posting and sharing your story. My son is 24yrs and was diagnosed when he had his second stroke. He never had any surgery but daily aspirin. Now we found out that it has progressed over the years that he has to have surgery. I was scared but your updates about the surgery is a huge relief. I pray that everything turn out fine.
Oh my god, I’m so glad I found your videos. I was diagnosed 1 Month ago, because I had a little stroke. In 2 days I’m undergoing surgery and your videos are helping me to be a little bit prepared for what’s coming and to have less fear. If I asked my doctors how I’m going to feel after surgery they just said that they are just operating and never had to undergo this surgery themselves😅 so it’s nice to hear that everything went well for you.
Hope you are doing good!
Thank you for your comment! I’m doing well. :) I’ve meaning to do an update video for a long time! I should definitely get around to doing that soon. If you’re on Facebook, check out the group “Moyamoya Disease (Rare Brain Disease)” - I’m in a few Moyamoya groups, and this one seems to be the most active so far. Good luck in your journey! Keep me updated! -Katie
Katie S. So surgery went well, but after that I had some problems with my blood pressure and then I got fever and had an allergic shock from the antibiotics. I spent 4 days in the ICU and hopefully I can leave the hospital on monday. But I’m feeling well, I have nearly no pain, so that’s good.
Oh wow :( You’ve been through a lot! Did you finally get to go home? Are you still feeling pretty well?
Katie S. I was send home for Christmas, but then I had to come back, because my scar still is infected and from the pain medicine I got agranulocytosis. Since January 1 I’m isolated, because the risk of an infection is really high, but I’m feeling well, so hopefully it’s getting better soon
My mother just went for surgery for moyamoya in may in south Africa and it was never been done in the country before so she was the first person in south Africa to have the surgery done by Doctors who didn't know what they were doing but thank god everything went well I'm so happy to see you score my mother's is ear to ear so hers is big and long ❤
I don't have Moyàmoya but I work in healthcare and I like to find out about diseases and patient experiences. Your journal was great. I kind of wish you'd keep uploading because you speak clearly and coherently and you'd make a great vlogger.
I found your videos to be wonderful. I was diagnosed in December 2009 and had two surgeries, both following year. I was told that I couldn't have a stent put in because my arteries are narrowed and twisted like a cork screw. So all they could do is lay my main arteries on my brain to get more oxygen to my brain. Do you have chronic headaches? I do. I found that Amitriptyline is the only thing that takes care of them. I had two mini strokes, that's how they found out about mine. I was 37 at the time and the hospital didn't believe me when I told them I was having a stroke! They sent me home with ibuprofen! Lost a companion of 11 years but I got the use of my arm back :) I'm a happy lady! I'm glad you're doing great as well. Take care! Thank you for sharing!
Hi Amy -- Thank you for your comment! :) Glad to hear that you are doing well. When it comes to chronic headaches, I actually noticed that my headaches improved after I had my surgery -- and I've only had one migraine since my surgery, too. I think the increased blood supply made a big difference.
I hope you only continue to get better and better! Best of luck to you!
Katie :)
Thank you I'm more confident about this illness ! Pray for my little cousin who has moyamoya since 2 day going through surgery
Hi I just happened to come across your video. I just was diagnosed with MoyaMoya diseases on January 3,2013 and I am having surgery on Feb. 12th 2013 @ Stanford University. So I'm a little nervous it was helpful to see someone else's experiences. I guess I just wanted to say thanks, and I hope your recovery goes well!
How'd it go
Hi Katie,
im Candacd i am almost 2 month out of surgery. i found out that i had moyamoya about 2 and half months ago. your videos have helped me alot. i dont feel so alone now. you and i have matching scars lol i have tbe bypass on my left side as well but will need the the right done in a few months to a year
Hi Kath.. I'm tryphena from India. Had a Moya Moya surgery a week ago. Surgeon said I might need another one on the left side as well in the next six months. Keep praying for me as well.
My daughter was diagnosed with moyamoya 10 years ago following a stroke. She has had arterial bypass surgeries on both sides and is holding her own but her surgeon is at Harborview in Seattle and her regular doctor never heard of moyamoya so we haven't had a lot of information on the disease. 10 years ago I don't think a whole lot was known about it. I just recently got online (thanks to my 10 year old grandson) and to my amazement-we are not alone. We just haven't been well informed by the doctors at all on what to expect as far as a normal life goes. I would like to know what information there is on the genetic aspect as I used to get debilitating migrains as a child and my mother died at 46 from a brain aneurysm back in 1976. Think it's all moyamoya? I'll keep reading every thing I can and bless you all for sharing your stories.
Hi Judy,
Thank you for sharing your story. I hope your daughter is doing well :) You know, I've heard there may be a genetic component to Moyamoya disease, but no one seems to have a definitive answer. I think Moyamoya is really under-diagnosed because the test used to diagnose it (cerebral angiogram) is so invasive, and the symptoms are really non-specific and could be attributed to so many other conditions.
I'm glad we have TH-cam as a way to connect to one another and talk about our experiences! :)
All the best,
Katie
just found out my daughter has moyamoya at 20 years old. never hear of it before until now but been learn a lot about moyamoya from the internet
My granddaughter is 7 and has had 2 stokes then surgery at Vanderbilt
Thank you for sharing, very helpful.
Thank you :)
Hi, thanks so much for your comment! BEST OF LUCK with the surgery - everything will be fine. I've only heard and read good stuff about Stanford. I'm glad I could help in some way! Let me know how your surgery goes! -Katie-
Got diagnosed with Moyamoya late October. Going to the mayo clinic for consultation in December.
Hi Katie love from India. I had a mou Moya surgery last Saturday..by god's grace it was a successful one n I'm going good so far
I just had the surgery and had a stroke during the operation, had to go to rehab to learn to move the left side of my body. This in the last two weeks. It hasn’t been easy.
Good vibes being sent your way
Hi! I had Moyamoya surgery too!!
Would you do a video of how your doing now? I'm just getting started on the journey and I'd like to see how your long term progress is? I actually had no symptoms, but I had a hemorrhagic stroke 2 months ago, that's how they ended up doing the tests and diagnosed me. I have been thinking about your story and I'd love to see an update on you! Thanks for putting this out there for all of us going through this!!
Hi Lindsey :) Thank you for your comment. I’ve been meaning to do an update video for years! Overall I’m doing really well and my symptoms are minimal on the right now. I have yet to experience symptoms on the left side of my body, but I do experience issues with word finding when I talk (especially if I’m anxious), but I’m not 100% convinced that it’s all Moyamoya-related. I will definitely make an update video soon, but I might have to do it on my phone since I haven’t been able to find my camera for awhile! ;-D
I'm so glad your doing well!! Thanks again for putting your story on here!!
Thanks!! I’m on Facebook (Kt Meghan), but if I don’t show up I will search for you! :)
Thanks I will let you know how it goes.
~Sarah
My son is having this within the week
this gave power, where you had one?
Hi Katy am diagnosed with moyamoya am really happy that u r done with it. my question is how many hours were u in the operation room?
Hi Mayar! My surgery was 4 hours altogether. How are you doing?
Katie S. thanks a lot for your answer it s relieving but as you knw numbness and dizziness sometimes and worries coz I have kids thanks for asking I appreciate it.
I hear ya! MoyaMoya can definitely be tough to deal with. Let me know how everything goes for you! :-)
I actually have surgery this Tuesday coming up I believe is june 3rd it actually relieves me that I will be ok. I just found out I had moyamoya like 2 weeks ago I did had strokes and thats when they found out on the anguiogram the second time on the right side though.
Hi Zuheily! Thank you for your comment. :) I hope everything goes well for you! Fingers crossed!
I am curious if you ever found out of you had Moya Moya disease or Moya Moya Syndrome. Just wonder if you know if yours was genetic?
hi my Name is Tama and i had a Question why does Moyamoya makes you difficult to speaking. geting words out. ? do you know
You look good after a week. My mom just had it. And. Sometimes she get stock. When she talks.
But she have. Both sides. And she have deabetes. She barely walk. She so swollen.