1. < Stroke & Cerebrovascular Diseases

I have Cerebral Small Vessel Disease: How are you coping?

Posted by sue60 @sue60, Apr 11, 2016

I have vascular small vessel disease that so far just has caused a severe loss of balance. I walk with a cane, but it is getting harder. Likewise exercise is not easy. I still drive short distances. I feel perfectly normal lying down and it is so much easier to do that. The sad part is I don't really see anything that is going to end this as otherwise I am healthy. I know there are many worse things. Does anyone else have this and how are you coping?

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red79 | @red79 | Mar 29 6:42am

Hi sue 60 I've also got small vessel disease of the brain,stay strong sue60

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red79 | @red79 | Mar 30 1:44pm
In reply to @sally12345 "Hi, I was diagnosed with csvd 3 years ago. I had an episode of off balance,..." + (show)
@sally12345

Hi, I was diagnosed with csvd 3 years ago. I had an episode of off balance, dizziness, lose of bladder a nd bowel, heavy sweating, diagnosed with having had a stroke. I feel at this point it's effected my everyday life. At the time I was shocked with it...but now, I am tired, lack of energy, off balance, very sore eyes as well now. Also heart palpitations ...I think it's worsening...At the 3 rdyear point. Up to last year I was walking 35 miles a week. Chopped a nd stacked my own wood.. Now I am weak...it's frightening. How do you keep going with this.

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Hi Sally 12345,I'm 45 and my eye sight change so now have 1 pair glasses 4 TV , reading,then my other pair 4 outside 4 distance,I was told I was lucky to get to 45 years old with out glasses.

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sarahvincent | @sarahvincent | Sep 25 12:21am
In reply to @nancywootten "I have severe white matter disease also. I had no idea until I got a concussion..." + (show)
@nancywootten

I have severe white matter disease also. I had no idea until I got a concussion in a golf cart accident. A brain scan led to an MRI which then led me to Mayo Clinic. I am 68 years old an extremely active. I teach and interpret sign language and am in a band at church. Since my diagnosis I started on a fat-free vegan diet and started learning the ukulele and Spanish. I don't feel like this diagnosis is a death sentence bur rather a new way of looking at my life. I do more, not less. I love more, not less. I want to start a blog about this because so many people do see it as a death sentence when really none of us have a guarantee that our lives won't end TODAY on our way to the store or crossing the street.

I plan on living the dickens out of my life, however long or short it may be. My husband and I have set upon upgrading our home to be a safer place for me and a nicer one. We moved my office into the Florida room so I can look at my newly landscaped back yard while I work. I wonder why I did not always live with this new improved attitude toward life!

I got back to Mayo Clinic in November or December and I'm planning to knock their socks off with my cognitive testing. I know this white matter will catch up with me sooner or later but in my 'in-between' time, I'm living life.

Good luck and may God bless us all!

Nancy

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Great outlook and I hope you are well🙏❤️. I’m 46 and had 3 strokes since April 2023 and the hospital have just confirmed I have a cavertoma. My white matter is very bad and the said it’s like the age of an 80 year old lady not 46? Kina hoping you could give me any tips or information. Thanks and hope your calmness and views keep you stronger x

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 1 5:38pm
In reply to @sarahvincent "Great outlook and I hope you are well🙏❤️. I’m 46 and had 3 strokes since April..." + (show)
@sarahvincent

Great outlook and I hope you are well🙏❤️. I’m 46 and had 3 strokes since April 2023 and the hospital have just confirmed I have a cavertoma. My white matter is very bad and the said it’s like the age of an 80 year old lady not 46? Kina hoping you could give me any tips or information. Thanks and hope your calmness and views keep you stronger x

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Hi @sarahvincent, welcome. A cavernoma is a cluster of abnormal blood vessels, usually found in the brain and spinal cord. They're sometimes known as cerebral cavernous malformations (CCMs).

Has any treatment been suggested to help avoid future strokes?

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