Cerebral Small Vessel Disease - How are you coping?

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

@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

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

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

@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!

@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

Hi @bdesteiguer - welcome to Mayo Clinic Connect. You have come to a good place for support. Feeling exhausted and mentally confused with a sore scalp and headaches would be a challenging way to live.

I'm tagging @4leigh @tcainaru @foundryrat743 @karen252 to see if they will share their experiences with you with CVSD and what they were told to do by their doctors. They also may know of a doctor you might see in your area in Seattle.

Bonnie - will you share more about the exhaustion you experience and how it affects your day-to-day life?

Trying adapt to balance loss. Scary because not being used to it and the change hits you. I wonder if the brain will find new connections to compensate neuroplaciticy.

I have found that neuroplasticity works! I worked with a physical therapist for about 6 months, on balance and gait issues. I started out shuffling, and now I walk better. i work in balance exercises too! There has been a gradual improvement!

@foundryrat743 That is encouraging. Gives me hope.