1. < Stroke & Cerebrovascular Diseases

I have Cerebral Small Vessel Disease - so far caused loss of balance

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, 2024

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

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red79 | @red79 | Mar 30, 2024
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, 2024
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, 2024
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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rengland | @rengland | 5 days ago

Hello I am a 45-year-old female that has just been diagnosed with hereditary cerebral small vessel disease. I had an MRI and it was confirmed through that. Along with my other symptoms of neuropathy, Raynaud's disease, cognitive decline, muscle loss and function, and gait issues. Is there anybody that's dealing with this or anyone that has any kind of information any kind of support groups that could help how common is this Is there a foundation for this. What kind of information is out there related to this condition. I really would appreciate anyone's advice and support and I look forward to hearing from anyone.

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1 reply
keithl56 | @keithl56 | 4 days ago
In reply to @rengland "Hello I am a 45-year-old female that has just been diagnosed with hereditary cerebral small vessel..." + (show)
@rengland

Hello I am a 45-year-old female that has just been diagnosed with hereditary cerebral small vessel disease. I had an MRI and it was confirmed through that. Along with my other symptoms of neuropathy, Raynaud's disease, cognitive decline, muscle loss and function, and gait issues. Is there anybody that's dealing with this or anyone that has any kind of information any kind of support groups that could help how common is this Is there a foundation for this. What kind of information is out there related to this condition. I really would appreciate anyone's advice and support and I look forward to hearing from anyone.

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I also have CSVD. It is disconcerting. I just finished a month of vestibular therapy which seems to have had a positive effect, and do daily exercises that were prescribed as well. I would recommend this to help with balance/gait issues. I also previously did cognitive therapy to get help when I had my severe CAD diagnoses, and this might be beneficial also.

I think that this is more common than people realize, but am not aware of any support groups.

Good luck!

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tc1945 | @tcainaru | 4 days ago

I also have CSVD. I am 72 and seeing the neurologist she does not seem to be concerned. Never instructed me on what to eat that may help or anything else that not what to do that will make it worse. Othen then glucose level, BP and Triglycerides.

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