I have Cerebral Small Vessel Disease: How are you coping?

@venki

I agree with @nancywootten. Giving up (or giving in) are not good options. They just create more problems.

Teresa

I think Yoga will help you immensely.Posies in sitting , lying down are available.Physical training helped me to recover from 30 days in ER and 40 days in hospital .Ihad severe heart attack, kidney failure in 2011.

I do Chair yoga also.My wife is trained Yoga teacher and I also learnt.We are in MN till Aug 8 or so.Will Love to share my experiences on Conquering Heart Disease.After careful evaluation , I stopped Statins in consultations with my Cardiologist.Fine now.

I was diagnosed and has surgery to remove it. Do you have one?

I had a cavernoma removed from my brainstem 4 weeks ago. I’m wondering how long it took you to recover? I still have extreme heaviness and tingling as well as numbness in the right side. Will this eventually go away? How about your Bell’s palsy symptoms? I loved being at the Mayo Clinic and if I knew it would be this hard at home I would have tried to stay in rehab longer! Thanks for the replies.

Welcome to Connect, @maria7521,

I moved your message and combined it with this existing discussion on cavernoma. I did this as I saw that you had also posted in this group, and thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

We have several members talking about cavernoma – please meet @ees1 @jeans @bellisima @jc2buds @nancye3 @brenda68 @pegorr – and you may also be interested in joining these discussions:
– Meningioma and Cavernoma https://connect.mayoclinic.org/discussion/meningioma-and-cavernoma/
– Cavernoma https://connect.mayoclinic.org/discussion/cavernoma/

While we wait for members to join in, here's some information from the Angioma Alliance, about what to expect after surgery:
http://www.angiomaalliance.org/pages.aspx?content=82&id=73

@maria7521, have you seen a doctor for your symptoms after surgery?

Hi Maria....I'm glad you are recovering. Do you know how long you had your cavernoma before you and your doctors decided on removing it? I have one on my thalamus. I am trying my best to keep it from bleeding! I wish I had some answers for you but I have no idea. I will be keeping you in my prayers!

Thank you. My dr is 2 weeks out.

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.

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!)