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?

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

@colleenyoung

Welcome @jc2buds. This is what I love about Connect! @jeans posted a question about Cavernous Malformation. While I couldn't connect her with a past member or recent conversations, you saw her message and jumped in.

@jc2buds Kerry, did I understand correctly that both you and husband have Cavernous Malformation or just your husband? You also mention lifestyle change you can make to slow the progression of disease. What changes have helped you?

Jump to this post

My husband has smell vessel disease of the brain he has had balance issues for aout 5 years than two years ago he had heart bypass surgery he devolped delirium in the hospital and after that his balance problem got 100 % worse and stayed thay way he hadva brief period last fall where he really started to improve but since then the disease has been progressing.if the dusease is in early stages you can slow the progession of it by keeping blood pressure under control as well as cholestrol stay active exericise your brain with crosswords computer work anything that challenges your brain if you smoke stop immediately eat a low fat diet all of which my husband wouldnt do now he has to work with whats left and its a stuggle for him walking is hard his eye sight has been effected every day is a challenge

REPLY
@colleenyoung

Welcome @jc2buds. This is what I love about Connect! @jeans posted a question about Cavernous Malformation. While I couldn't connect her with a past member or recent conversations, you saw her message and jumped in.

@jc2buds Kerry, did I understand correctly that both you and husband have Cavernous Malformation or just your husband? You also mention lifestyle change you can make to slow the progression of disease. What changes have helped you?

Jump to this post

The doctors suggested a low fat diet? Did they say any thing about exercise? Five years ago I used to run about 3 miles a day. The things I've read make me think that that kind of thing may be a thing of the past. My eyes are acting up. Some days it feels as if I have someone else glasses on. ( I don't wear glasses.) I've lived a fairly healthy life, no smoking, regular exercise and stuff like that but I am almost 60 and it is a progressive disease. They've recently moved my appointment up to June 20th. I'm glad about that. I want to hear what Mayo has to say.

REPLY
@colleenyoung

Welcome @jc2buds. This is what I love about Connect! @jeans posted a question about Cavernous Malformation. While I couldn't connect her with a past member or recent conversations, you saw her message and jumped in.

@jc2buds Kerry, did I understand correctly that both you and husband have Cavernous Malformation or just your husband? You also mention lifestyle change you can make to slow the progression of disease. What changes have helped you?

Jump to this post

I wish we lived cliser to a msyo clinic we dud go to johns hopkins they gave my husband some exercises to do in occpational therapy that helped with his hands his limbs have been affected i wish you the best of luck with your appiontment i know it feel like its hopeless but it helps to have someone to talk to

REPLY

Does anyone has been diagnose with carvernos malformation

REPLY

Welcome to Connect @bellisima. I moved your message to this discussion thread in the Brain & Nervous System group so that you could meet other members talking about Cavernous Malformation. Please meet @jeans and @jc2buds.

@bellisima, when were you diagnosed with Cavernous Malformation and how are you doing today?

REPLY

I was diagnosed seven month ago, with 6 cavernous malformation, I went to the ER last Saturday due to severe headache.

REPLY
@bellisima

I was diagnosed seven month ago, with 6 cavernous malformation, I went to the ER last Saturday due to severe headache.

Jump to this post

Is that the same thing as small vessel disease of the brain?

REPLY
@bellisima

I was diagnosed seven month ago, with 6 cavernous malformation, I went to the ER last Saturday due to severe headache.

Jump to this post

Hello Bellisima,
I was recently diagnosed with a cerebral cavernous malformation in the right temporal lobe. I had what I thought were migraines for years. I've blacked out too but I imagine they were actually small seizures. I go into Mayo Monday to have it checked out better. I'm really anxious to see what they have to say.
Where are your cavernous malformations? Do you like your doctors. How are you feeling on a day to day basis?

REPLY
@bellisima

I was diagnosed seven month ago, with 6 cavernous malformation, I went to the ER last Saturday due to severe headache.

Jump to this post

Im niot sure what the malfirmation are my husband has white matter disease his motor skills have been affected the most i guess most of the doctors we've seen are ok they dont offer us mush advice it seems like you have to figure things out for yourself

REPLY
@bellisima

I was diagnosed seven month ago, with 6 cavernous malformation, I went to the ER last Saturday due to severe headache.

Jump to this post

On a day to day basis he doesnt spend to much time on his feet because his balance is bad and since he sits all the time he tires easy when hes on his feet he doesnt talk to me about how he feels other than to say when hes on his feet he feels like hes swaying even if he doesnt look like he is he gets agitated easily

REPLY
Please sign in or register to post a reply.