Cerebral Small Vessel Disease - How are you coping?

@lisalucier
Dear Lisa, I was recently diagnosed with small vessel disease and am looking for support. I have lots of appointments with doctors, but all they say is there's nothing I can do but exercise to keep the blood flowing in my brain, sleeping well and eating well. I am definitely doing that, but am still exhausted and mentally confused and with a sore scalp and some headaches. Is there really nothing else to try? I live in the Seattle area if anyone knows of someone knowledgeable about csvd in this area who might be accepting patients? I'd be interested in being in a research study or something, but it seems to be almost impossible to even get an appointment at the University of Washington. Thank you for your caring and time, Bonnie

@mwmc777 I have had several lacunar strokes, along with my small vessel brain disease diagnosis!! Also, I have had a couple terrifying episodes of A/fib!! Docs recently put me on the expensive blood thinner, Eliquis! Now, this week, I have been scheduled to have the Boston Scientific heart implant “The Watchman” put into an appendage within my heart, via a vein, accessed from high on one of my legs. A small titanium balloon device is to be inserted in my heart, permanently, that will stop clots from forming in my heart, during an a-fib episode! So, perhaps, this could be an option for you, too! My ‘operation’ is scheduled for March 11,2026! So, have you or your Doctor discussed ‘The Watchman’ possibility solution, in your case? Also, if there is anybody reading this, who has had a “Watchman” implanted in their heart, I would welcome comments, and advice. on how the procedure went, and is it helping with their a-fib problem? Like, has anybody had a stroke, after a “Watchman” implanted, and has it affected their brain small vessel disease? I hope, going forward, that you will have less problems with strokes and a-fib. Small vessel disease is a difficult diagnosis to deal with! Good luck!

Hi, @dle25 - wanted to check in with you to see how the brain fog, balance, headaches and fatigue are going lately?

Hi @4leigh - just wondering how things are going for you and your health lately?

@4leigh what did your Dr tell you to do with this disease or diagnosis? This weakness, lightheadedness and physically i have lost strength also from this disease

I’ve just learned I had this diagnosis a week ago. I’ve been short of breath and my walking distance has been where I have to stop to regather myself if winded, then suddenly my gait is becoming notably different. I’m slower and seemingly more likely to become imbalanced. Feels really odd but at times I feel like I need a walking stick or something for balance

@tcainaru this is all new to me.. but yes I have been light headed, short of breath and my walking seems to has become more difficult..

@bobaloo1
So sorry to hear about your dx. Yeah, I am still waiting to get in to see my cardiologist as I do have high cholesterol, I do take medication for it, but I must need to be more aggressive in lowering it. I am not sure what other tests he will want to run. I am due for an Echo as I also have MVP. It is next to impossible to get in to see any kind of specialist. Keep exercising, diet, I would also try listening to music, and exercise your brain even if it is just doing an easy puzzle. Keep up the good fight.

@bobaloo1
coronary artery disease

@karen252 I so understand what you’re xperiencing.
My doctor did an MRI because she suspected Mild Cognitive Impairment and it showed severe CSVD. This dx has so changed my life for the worse. I can’t stop dwelling on it. I am having a hard time finding a vascular neurologist and that doesn’t help.

So I’ve done a lot of research and have changed my diet and am exercising, however since my CSVD is severe I wonder if it is pointless.

Sorry to dump on you but I have no one to talk it over with.