Moyamoya disease is a rare brain disorder - and one Island woman has had it not once, but twice. She’s asking for your help in defraying medical and travel costs.
I was just recently diagnosed with Moya Moya disease and will be undergoing surgery this coming Wedesday. I'm doing research on it and learning as much as I can....listening to everyones experiences is giving me a better understanding of what I might be facing.
I have MoyaMoya disease too. I’ve had 2 surgeries and following each surgery I have had a stroke. My first one was when I was 6 and the second was when I was 7. I’d been having TIA’s and attacks like that. It’s a progressive disease. It’s been almost 10 years since my last surgery. The worst it gets for me is when I have headaches and migraines, sometimes my vision will blur out and my hand will go numb. It’s good for people to hear about this disease.
Zombies Rule MoyaMoya is a progressive disease so there’s no “getting rid” of the disease but the 2 procedures definitely benefited me. Haven’t had many symptoms for the past almost 10 years
My husband was diagnosed 4-2011 with Moyamoya in all regions of his brain after having bilateral stokes on the same day. He had a total of 8 strokes prior to surgery. He had unsuccessful surgeries on both sides of his brain. He had 2 more strokes. One right after the first surgery and again in 2016. Theneuro angiogram in 2016 showed that it had rapidly progressed to the point of the dye not showing up anymore because the vessels are so tiny. The surgeon said they are smaller than cobwebs. Jeff was able to regain some lost abilities through speech pathology to help with the cognitive decline. He also has had toxic elements panels done as well as blood tests for nutritional deficiencies. Addressing these has helped restore some lost abilities and he is stable now. He declares God's Word over himself and speaks life to his body everyday.
Moya moya is a very dangerouse disease to have during covid because of the narrow carotid artery due to the damage from moya moya, covid causes blood clots which makes moya moya LETHAL, covid has killed many moya moya sufferers including my wife of 11 years. Rip Carmen Rivera you are deeply missed 🙏.
My mom who is east Indian just had surgery a few days ago. She's 69 years old. She had a stroke while she was having surgery. She is still recovering now at the hospital. Please keep her in prayer!
@@sindhupriyakalvapalli4574 My mom just had her 2nd surgery a few months back for Moya Moya. The Dr's were amazing! Unfortunately, my mom had a stroke during the 1st surgery, which made her left arm weak and her balance is a little off. It was a minor stroke, but nevertheless, she is slowly recovering... I believe that if you want a good quality of life and be around for a while, you definitely need to get surgery for this disease otherwise you perish. As in every surgery, there is a high risk and complications related to it.
@@sindhupriyakalvapalli4574 Yes, I believe surgery is the best option, otherwise you will die. My mom just had her second brain surgery from moyamoya and she is recovering once again.
I HAVE RARE DISEASE MOYA MOYA I HAVE VERY BAD STROKE 6 TO BACK I TALK ANYMORE ONLY TEXTED I HAVE G-TUBE IT'S FEED TUBE I HAVE BRIAN SURGERY ABOUT 5 YEARS NOW 😢😢😢😢😢😢😢😢😢😢MAY GOD BLESS ALL GUYS BEAUTIFUL FAMILY MEMBERS AMEN 🙏 OKAY SWEETIE 🙏 😢😢😢😢😢😢
My close friend was just diagnosed with this she'll have to get both sides done. She just had her right side done and in about 6 to 9 months she May be having het left side done. Right now she's having speech complications. It's terrible. God bless.
This moya moya is horrible and sad, my cousin is African American and black foot Indian and got moya moya out of no where then had surgery on her brain then lived six years later and passed recently, she was in her late 30s. Her sister one year apart just got diagnosed last week with it also. She had multiple strokes in the last couple months and Im so praying for everyone that every has to deal with such horror. God bless all🙏🙏🙏
Moya moya is a very dangerouse disease to have during covid because of the narrow carotid artery due to the damage from moya moya, covid causes blood clots which makes moya moya LETHAL, covid has killed many moya moya sufferers including my wife of 11 years. R.I.P carmen Rivera you are deeply missed 🙏 .
I recently found out I had Moyamoya on 05/01/20, after an accident. Have not had any surgeries nor has my neurologist talked about one just yet, but as for now I’m on a daily 81mg of aspirin until I go back to see him this year.
i had moya moya and my doctor told me after my first mri that it was on my right side and after a few months, we did another mri and it went to my left side as well, so i got surgery on 9/21/18 and i was discharged from the hospital on 9/27/18. my doctor told me that she has never done surgery on both sides in one day (it took 14-16 hours for both sides). the surprising thing was that she left for texas to go to her husband on the 29th so i was her last patient
Hi My son 1year and two months old had moyamoya On 04/02/2021 we made the first surgery at the left side But unfortunately after two weeks he had stroke on the right side on 28/02/2021 we made the surgery to the right side But after surgery until now he had weakness at the left side of his body ( arm and leg)
Hi, I had stroke last august 2018 and its been a year and they didn't know what triggered it, I already had the best neurologist in town, and they're asking for an MRA. Can I ask, how do they detect moya moya? Cause my nephew had one and hes only 2 years old but he already went to surgery last december 2018.
Eating pomegranates daily has helped keep the headaches away for my husband. If he doesn't eat one he gets dull to severe headaches. Staying hydrated is also important. Niacin has also helped. Labs showed his levels were extremely low.