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sue60
@sue60

Posts: 3
Joined: Apr 05, 2016

Small Vessel Disease in the Brain & Cavernous Malformation

Posted by @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?

REPLY

Hi @sue60, welcome to Connect.
I’d like to connect you with @caregiver49, who is also dealing with small vessel disease and would like to talk with others. Her biggest issue at the moment is with unrelenting fatigue.

Sue, do you struggle with fatigue as well?

@colleenyoung

Hi @sue60, welcome to Connect.
I’d like to connect you with @caregiver49, who is also dealing with small vessel disease and would like to talk with others. Her biggest issue at the moment is with unrelenting fatigue.

Sue, do you struggle with fatigue as well?

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Fatigue is not as much a problem as the loss of balance. Of course, walking around while concentrating on balance is tiring.

Have a beautiful Aloha Day!

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.

Liked by Solo Act

@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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Hi,

I’ve had brain and neurological diseases all my 77 years, including 3
TIA’s. Your MRI will likely in conjunction with an Electroencepliagram or
even vidio monitoring help determine a prognosis that your doctor can
explain.

One thing, (most important) that I learned at Stanford, U.C.L.A. and
regular research was “how to control and balance items from anxiety,
depression, speculation, and worry. Since I went through 4 stages of
epilepsy with migraine headaches, this information allowed me to live my
life, obtain my education and employment, and now be retired. The change I
found was “when something is constantly on your mind and is worrisome find
a way to get rid of it.” Play a game, computer or family and friend; read
a book, change television channels, watch a CD movie, or take a walk.”

Doing those things have an ability to change the path of your thought
(which can be depressive and aniety filled) to something else. Because if
your walking you are looking where your walking, if your playing a game
your thought is often on the game taking away your worries and letting you
start fresh after the game.

Kay

@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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; n if you faling, have your blood pressure sitting and standing taken,
dizzyness can sometimes be from Orthostatic Hypotension.. Next time you see
a doctor or nurse “ask them to watch you walk.” You could have an Ataxic
Gait, which can often be corrected or something else.

Kay

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?

@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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Hi@colleenyoung. My blood pressure and cholesterol are under control. I have been put on Pletaal to thin my blood. I see a dietitian and I have a personal trainer. I also do brain training exercises. I have been doing all this before my diagnosis.

I see my neurologist regularly. The next appointment is 2nd June. Apart from that I seem to be just waiting for my dementia to come. It seems to be a death sentence.

@beck

Liked by caregiver49

@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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I don’t think small vessel disease of the brain is well understood and it is difficult for any doctor to prepare one for what to expect. Symptoms occur due to changes to different parts of the brain so vary from one person to the next. Dr Michael Zeineh of Stanford University has been in the news recently about a relationship between Chronic Fatigue Syndrome and White Matter brain changes. Keep in mind that brain changes are more extensive in some patients more than others. Hopefully those with less will live to learn bio markers are confirmed that will lead to treatment. Presently my research has not turned up much other than controlling cholesterol, Blood pressure, thinning blood which is basically stroke prevention. Best to all.

@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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Here is information about Dr. Zeineh’s research that @caregiver49 refers to
“Study finds brain abnormalities in chronic fatigue patients” https://med.stanford.edu/news/all-news/2014/10/study-finds-brain-abnormalities-in-chronic-fatigue-patients.html

Liked by dazza333

@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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@beck – How was your appointment with the neurologist last week?

Liked by Solo Act

@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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I’ve been diagnosed with Cavernous Malformation of the right temporal lobe. I had a MRI because I had severe headaches, some falling with black outs with weakness afterwards. I go into Mayo soon to find out more about it but wondered if anyone has heard of this? It seems to be kind of rare and sometimes inherited.

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?

Liked by dazza333

My husband has it

@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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It is a progressive dieases and there is no treatment for it but if it is in the early stages there are changes you can make to slow it down i have been livi g with the effects of it for a few years now my husband has it

@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.

Jump to this post

I agree basically doctors cant tell you want to expect because they dont know themselves

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