Moyamoya survivor needs second surgery

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.

[@ceceb.3536]

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.

[@zombiesrule5716]

CeCe B. Sorry to hear that ...did you get did of the diease???

[@ceceb.3536]

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

[@zombiesrule5716]

CeCe B. Is it helping you???how long you had it

[@ceceb.3536]

Zombies Rule i was diagnosed when I was about 5 and Yes the surgeries have helped thus far.

[@zombiesrule5716]

CeCe B. You are lucky and blessed then so you don't have head aches anymore

[@shanieg7031]

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🙏🙏🙏

[@timmyhammer2602]

Shanie G im 11 and my dad is sufering 😔😔😔

[@eliasr4427]

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 🙏.

[@mariahisthe1]

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.

[@yolandarivera2548]

I am a moyamoya survivor also

[@binayaneupane3534]

yolanda rivera my Nephew has Moya Moya dioganised. What is the best place for treatment and costs

[@jimmyvasquez2737]

My wife was Japanese and she had moya moya too she didn't make it she die 8 months ago

[@eliasr4427]

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 🙏 .

[@alivewithhemp4989]

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.

[@simi6152]

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 father also having the same Moyamoya and we are planning to go with surgery what's your suggestion on that?

[@simi6152]

@@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.

[@simi6152]

@@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.

[@sdsurfgirl60]

I'm about to have my first of two bypass surgeries. I'm so scared after reading the comments.

[@GracielaSalas-yz8ij]

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 🙏 😢😢😢😢😢😢

[@sleepy_ninja95]

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.

[@katieos]

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

[@akaskhan5069]

How much money need?

[@stef3371]

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.

[@musika7713]

Angiogram

[@JawdatAlali]

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)

[@mohammadyounuskhalil6370]

Hi.. My daughter same disease

[@lizontiveros3142]

My husband is a moyamoya survivor💙

[@timmyhammer2602]

Liz Ontiveros im 11 and my dad is a moyamoya survivor

[@karendanchak8089]

i have MoyaMoya, just had my second EDAS surgery a month ago

[@tryphenasolomon4797]

I had the surgery done on my right side n preparing for the other side I'm few months

[@AllTimePvP]

I'm a moya moya survivor, and I'm going in for a third surgery this week

[@tryphenasolomon4797]

Hi i had two surgeries I'm the last 3 months. May I ask you why you are going for the third one ?

[@Computergk91Gaming]

i had it moyamoya to 10 years ago today when I had the surgery

[@santosmoreno9656]

I had 2 surgeries for the same reason 1 in 2006 and the second in 2007

[@ivonetekarline]

eu tenho moya-moya, descobri na quarta feira,hoje é sexta feira santadia 30 /03 /2018

[@dayoliver1109]

Oi, como vc está? Infelizmente minha irmã também, descobrimos a 5 dias que ela tem essa doença...

[@janasenarsshekhar7136]

My brother is suffering with moya moya disease but we are poor ,where is the best place for treatment

[@kvmanoj1993]

JANASENA RS SHEKHAR sir last 5 months I am having this disease .don't worry

[@topperschoice3]

Nimhans govt

[@aakritisinha2227]

Nimhans Bangalore

[@jalilahajjoub4351]

I still hade such a weired headaches after this. Moya moya. Omg

[@alivewithhemp4989]

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.

[@brianedwards4370]

Unfortunately Native Americans its common! Being lost mother to Moyamoya last year. We need to spread word about this damn disease!!

[@justdome26]

I’m so sorry for ur loss🙏🏽🕊🕊

[@justdome26]

I am so sorry for your loss 🙏🏽🕊🕊

[@hellobye3085]

I 2 am a moya moya survivor

[@stephaniewoodley1451]

I have I have surgery 11/3.I am scared.

[@alivewithhemp4989]

How are you doing?

[@eliftokgoz313]

İs it a costly surgery

[@simi6152]

Yes... if you don't have insurance.

[@cynthialittles723]

I have moya moya,

[@zombiesrule5716]

cynthia littles sorry to hear that hope you get better

[@alivewithhemp4989]

How are you doing?

[@joember9080]

I have also Moyamoya disease im so lucky im in Norway 🇳🇴 thanks to Dr. Msrcus i have operation in October 2029

[@radnukespeoplesminds]

this is what america has instead of a functional/universal healthcare system