Small Vessel Disease in the Brain & Cavernous Malformation

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 ir 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?

@colleenyoung

Welcome @beck!
I moved your message to this thread about cerebral small vessel disease started by @sue60. Great input @irvkay312!

Beck, when is your next appointment? What are the next steps?

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My next appointment is July 6th. I think that the next steps will be to take more tests to see what’s going on. They will talk to me about options and maybe have some ideas for headache pain other than aspirin. Hopefully they will have some ideas about meds for seizures.?

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@colleenyoung

Welcome @jeans. I found some detailed information about Cavernous Malformation on the National Organization of Rare Diseases website http://rarediseases.org/rare-diseases/cavernous-malformation/

I used the search function, but didn’t find anyone who had specifically mentioned cavernous malformation on Connect – yet. Thanks for starting the discussion. When is your appointment at Mayo?

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Thanks, Colleen. I am trying to read everything I can find on the subject.

Liked by Ali Skahan

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@beck

I’m a 68 year old female oriental. I have been falling in recent years. Slow to understand speech. Passed psychological tests. Brain imaging shows cerebral small vessel disease. What is my prognosis.

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What are some of the changes I can make? I’m afraid I’m probably not in the early stages but it’s taken quite a while for anyone to send me for a MRI.

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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?

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@beck

I’m a 68 year old female oriental. I have been falling in recent years. Slow to understand speech. Passed psychological tests. Brain imaging shows cerebral small vessel disease. What is my prognosis.

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My husband has small vessel diease of the brain and i agree dictors cant really tell you what to expect some days are worse than others but all days are challenging

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My husband has it also he struggles with balance he has many falls no longer can drive and needs to use a walker there is no treatment for it just physical therapy it helps to know we arent alone in this that there are others out there

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@jc2buds

My husband has it also he struggles with balance he has many falls no longer can drive and needs to use a walker there is no treatment for it just physical therapy it helps to know we arent alone in this that there are others out there

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So true! I’m glad you and @jeans have connected.

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@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?

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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

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@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?

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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.

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@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?

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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

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Does anyone has been diagnose with carvernos malformation

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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?

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

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@bellisima

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

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

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@bellisima

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

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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?

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