Cerebral Small Vessel Disease - How are you coping?

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

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.?

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

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

My husband has it

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?

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.

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

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

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.