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.

Colleen Young, Connect Director | @colleenyoung | Jun 10, 2016

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?

Kerry Mapstone | @jc2buds | Jun 12, 2016

My husband has it

Kerry Mapstone | @jc2buds | Jun 12, 2016

In reply to @beck "I'm a 68 year old female oriental. I have been falling in recent years. Slow to..." + (show)

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

Kerry Mapstone | @jc2buds | Jun 12, 2016

In reply to @beck "I'm a 68 year old female oriental. I have been falling in recent years. Slow to..." + (show)

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

JeanS | @jeans | Jun 13, 2016

In reply to @colleenyoung "Welcome @beck! I moved your message to this thread about cerebral small vessel disease started by..." + (show)

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.?

JeanS | @jeans | Jun 13, 2016

In reply to @colleenyoung "Welcome @jeans. I found some detailed information about Cavernous Malformation on the National Organization of Rare..." + (show)

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

JeanS | @jeans | Jun 13, 2016

In reply to @beck "I'm a 68 year old female oriental. I have been falling in recent years. Slow to..." + (show)

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.

Colleen Young, Connect Director | @colleenyoung | Jun 13, 2016

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?

Kerry Mapstone | @jc2buds | Jun 13, 2016

In reply to @beck "I'm a 68 year old female oriental. I have been falling in recent years. Slow to..." + (show)

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

Kerry Mapstone | @jc2buds | Jun 13, 2016

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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