1. < Stroke & Cerebrovascular Diseases

Moya Moya ( Let talk) struggle's, Hope and Recovery

Posted by smiley777 @smiley777, 4 days ago

Hello my name is Shane,

I was diagnosed with moya moya disease about 11 years ago. Although previously, before receiving my diagnosis. I suffered four strokes, grand mal seizures, countless TIA's not to mention all the neurological and physical deficits through out the process. Ever since my first stroke I feel as though I've been misunderstood in a lot of facets of life. Does anyone feel the same?

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Moderator
Lisa Lucier, Moderator | @lisalucier | 4 days ago

Hi, @smiley777 - welcome to Mayo Clinic Connect. You've for sure been through some significant medical events.

I'd like to tag others who have talked about Moya Moya @arianajpalomo @micayla09 @mking2020 @aforcucci @badresser @sallen52 @yolandar @saigenicole. I think they will relate to feeling misunderstood in many facets of life and in experiencing neurological and physical deficits .

What is the most significant way in which you've felt misunderstood, @smiley777?

REPLY
1 reply
aforcucci | @aforcucci | 4 days ago

Shane,
Good morning. My name is Andrew. I was diagnosed with Moyamoya about half a year ago; however, it has been long standing (over 10 - 15 years) and nobody ever diagnosed me. I had all the same symptoms as you and none of my regular doctors knew what to do. They tried to label things as fibromyalgia and chronic fatigue, they ruled out lupus, MS, and other things. It’s such a rare disease that many don’t have a full understanding and don’t know what they are looking for symptom wise and for a diagnosis. It’s been very frustrating. Explaining things to coworkers, family, and friends have been exhausting. My wife thought I had very very early onset dementia symptoms along with irritation.

My last stroke was my turning point when I was sent me to the right neurologist who diagnosed me. They explained the symptoms and explained where certain things caused deficits. The blood and oxygen levels aren’t getting to the brain, and therefore slow processing times, impact personality, fine motor skills, etc.

Last November, I had my left side cerebral vascular bypass from Dr. Tawk (neurosurgeon) at Mayo Jacksonville. I have been doing much better; however, I did have complications that lasted through January of this year. These complications are not normal but my body clotted all the donor arteries and I had an infection. I am due back next Tuesday for my titanium skull flap implantation, and then we are waiting to do the right side. If you have any other questions, please feel free to ask. I will be available up until next Monday since my surgery at Mayo is next Tuesday. I hope you have a great remainder of your week!
Very Respectfully,
Andrew

REPLY
1 reply
smiley777 | @smiley777 | 4 days ago
In reply to @lisalucier "Hi, @smiley777 - welcome to Mayo Clinic Connect. You've for sure been through some significant medical..." + (show)
@lisalucier

Hi, @smiley777 - welcome to Mayo Clinic Connect. You've for sure been through some significant medical events.

I'd like to tag others who have talked about Moya Moya @arianajpalomo @micayla09 @mking2020 @aforcucci @badresser @sallen52 @yolandar @saigenicole. I think they will relate to feeling misunderstood in many facets of life and in experiencing neurological and physical deficits .

What is the most significant way in which you've felt misunderstood, @smiley777?

Jump to this post

Well for the most part I'm very reserved and very observant, for the most part. I am a quiet and calm reserved individual due to my speech handicaps, through this journey. Naturally I'm a very outgoing courteous, lend you the shirt off my back kind of guy. But I'm no dummy. Everything seems to be clicking upstairs but my outward appearance or demeanor gives off a different kind of vibe. Most, take my quietness or even kindness and try to weaponize it for weakness. And this in return is very frustrating not only for me but for others as well.

REPLY
smiley777 | @smiley777 | 4 days ago
In reply to @aforcucci "Shane, Good morning. My name is Andrew. I was diagnosed with Moyamoya about half a year..." + (show)
@aforcucci

Shane,
Good morning. My name is Andrew. I was diagnosed with Moyamoya about half a year ago; however, it has been long standing (over 10 - 15 years) and nobody ever diagnosed me. I had all the same symptoms as you and none of my regular doctors knew what to do. They tried to label things as fibromyalgia and chronic fatigue, they ruled out lupus, MS, and other things. It’s such a rare disease that many don’t have a full understanding and don’t know what they are looking for symptom wise and for a diagnosis. It’s been very frustrating. Explaining things to coworkers, family, and friends have been exhausting. My wife thought I had very very early onset dementia symptoms along with irritation.

My last stroke was my turning point when I was sent me to the right neurologist who diagnosed me. They explained the symptoms and explained where certain things caused deficits. The blood and oxygen levels aren’t getting to the brain, and therefore slow processing times, impact personality, fine motor skills, etc.

Last November, I had my left side cerebral vascular bypass from Dr. Tawk (neurosurgeon) at Mayo Jacksonville. I have been doing much better; however, I did have complications that lasted through January of this year. These complications are not normal but my body clotted all the donor arteries and I had an infection. I am due back next Tuesday for my titanium skull flap implantation, and then we are waiting to do the right side. If you have any other questions, please feel free to ask. I will be available up until next Monday since my surgery at Mayo is next Tuesday. I hope you have a great remainder of your week!
Very Respectfully,
Andrew

Jump to this post

Well I'm sorry that you had to go through this Andrew. Any difficulties with your speech? I noticed that you said you had slower processing speed. How are you able to work through it, do you have an advocate on your behalf?

REPLY
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