I have Cerebral Small Vessel Disease - so far caused loss of balance

Welcome to Mayo Clinic Connect @allysaco. I've moved your discussion here to this previous discussion whether members have been talking about cavernous malformation.

How is your husband doing currently?

I’m looking to connect with someone with this condition. My husband was recently diagnosed.

@dorac I also have this disease at age 42, apart from aspirin and trying to eat healthy and exercise I have not been advised on anything else, not sure how the disease progresses, I hope you find some Answers! Live my life day to day! I have also been taking CBD oil which is helping my symptoms

Welcome to Connect, @dorac
You are not alone. I'd like to introduce to you other members who are also living with small vessel disease in the brain, like @niquinon @lhopper123 @nancywootten @brenda68 @venki and @smilesyourway.

Dorac, while we wait for others to join the conversation, can you tell us a bit more about yourself. You mention that you were recently diagnosed with small vessel disease. That can be hard to hear. I love reading Nancy's posts about actions she is taking in both activities and attitude to keep her mind active and the condition at bay for as long as possible. Do you have activities that you enjoy to keep you mind stimulated?

I was recently diagnosed with small vessel disease in the brain. There doesn't appear to be much self help regarding this disease on the internet.

Thank you Nancy....I appreciate your words very much!

I loved your post! I loved what a great advocate you are for yourself. That is so very important regardless of what condition you have. If you know something is wrong you keep trying until someone pays attention to you.

Good for you Brenda!

Goodness 3 times in a week....that is a lot...from my readings there is no way to tell what makes them bleed or when they will bleed. People seem to all be very different. They did a angiogram and he said they would do a scan in like 6 months. I just really have no idea when it does bleed. It causes me no pain. Just put me into sleeping and I feel like I am far away. The first time I finally drove myself to the Medical Center I don't remember driving there...and the nurse came in to ask me questions...I couldn't answer any....they transferred me to the ER and did a scan to find it....finally got in touch with my husband. The second bleed.... I just felt somewhat away...not as bad as the first time....and it was about 1 1/2 year after the first time. I sat on it that long because the Asheville doctors had no idea what it was...so I was fine with it...but then when I went back and he kind of made me feel like a crazy woman for coming back...I ask for a second opinion. I went to Duke and the doctor told me right away what I had. It really takes yourself getting to know it all the best way possible. I feel that is what I am doing....hope its the right way! Keeping you in my prayers! 🙂 (hope this made some sense!...I am awful at writing!)

I found out I had it and then it bleed 3 time in 3 weeks so they had to take it. I’m so sorry you have one as well, such a hard decision you have to make.

Thank you. My dr is 2 weeks out.