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

Posted by sue60 @sue60, Apr 11, 2016

I have vascular small vessel disease that so far just has caused a severe loss of balance. I walk with a cane, but it is getting harder. Likewise exercise is not easy. I still drive short distances. I feel perfectly normal lying down and it is so much easier to do that. The sad part is I don't really see anything that is going to end this as otherwise I am healthy. I know there are many worse things. Does anyone else have this and how are you coping?

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

JeanS | @jeans | Jun 16, 2016

In reply to @bellisima "I was diagnosed seven month ago, with 6 cavernous malformation, I went to the ER last..." + (show)

I wonder too...... So many of these things are similar...

JeanS | @jeans | Jun 16, 2016

In reply to @bellisima "I was diagnosed seven month ago, with 6 cavernous malformation, I went to the ER last..." + (show)

that's frustrating.

bellisima | @bellisima | Jun 17, 2016

I have the bigger on the left frontal lobe, but when I had the MRI done the doctor told me that I have in 6 in total so the bigger one is to deep into my brain, can't do surgery.

Kerry Mapstone | @jc2buds | Jun 17, 2016

In reply to @bellisima "I have the bigger on the left frontal lobe, but when I had the MRI done..." + (show)

Thats what we were told that it is down deep in the brain nothing can be down

Kerry Mapstone | @jc2buds | Jun 17, 2016

Thank you for your input so much of my husbands problems are listed as small vessel diease of the brain and poly neruophathy ill defined which i take that as meaning they dont have a clue whats wrong so frustrating

caregiver49 | @caregiver49 | Jun 18, 2016

In reply to @jc2buds "Thank you for your input so much of my husbands problems are listed as small vessel..." + (show)

Google Prevention and management of Cerebral Small Vessel Disease. It is the most current info I have found so far. Good luck

Kerry Mapstone | @jc2buds | Jun 18, 2016

In reply to @jc2buds "Thank you for your input so much of my husbands problems are listed as small vessel..." + (show)

Im gonna check it out thank you so much and please keep in touch

caira | @caira | Oct 30, 2016

@jeans how did your appoint go at the Mayo Clinic? I have been living with this for 4 years now. I've been going to U of M in Ann Arbor, MI. I have a Neurosurgeon, Neurologist and Pain Specialit. Nobody can seem to help me. The Neuosureon doesn't want to do surgery due to it being deep in my brain. My Neurologist can't seem to find any meds to help me with the pain and other symptoms so he sent me to the pain management and they have the same problem. Nothing seems to be working on me. The only thing that seems to lessen some of he pain is opioids but they aren't good for long term. My pain management went opioid free so they want to try Suboxone but I hear it's a ugly drug so I don't want to try it. I have never had any type addictions so I don't know why they want to even try that. I was told by another doctor out of Dearborn, MI that don't think I will benefit from it. I have pain 24/7. Sometimes it mild sometimes it's sever. On a pain scale from 1-10 most of the time it's only a 4-5 but a lot of the time it's 9-10. When the pain gets to about 6 I start to get dizzy feeling and my left eye starts getting really blurry. By the time the pain gets to around 8 I start to have stabbing pains behind my left eye and get whiteout vision for a few seconds. Do you also experience any of these systems? I think doctor are still trying to figure out how to treat Cavernous Malformations. Most of the doctors have tried to treat my pain like migraines but none of the migraine meds seem to have any effect on this. I'm discouraged because nobody seems to have any answers.

Colleen Young, Connect Director | @colleenyoung | Mar 30, 2017

Hi @sue60 @beck @caregiver49 @jeans @jc2buds @bellisima and @caira,
We haven't heard from you for a little while. I'm writing today not only to check in, but also to let you know that we opened a new group on Connect today dedicated to Cerebrovascular Diseases http://mayocl.in/2nntd8A
Your discussion on Cerebral Small Vessel Disease has been moved to this new group. I hope you're follow the group and stay CONNECTed.

If you have a moment, it would be great to hear from you.
Colleen

LC | @lmg1128 | Jun 8, 2017

Hi group- my little sister (well I suppose 34yrs old isn't "little") received a diagnosis of "small brain vessel disease" just this morning after months of headaches, numerous trips to the ER, trying multiple medications, a referral for a sleep study and finally she demand an MRI. The MRI was completed last Thursday and she received the call today that it's not a tumor (her worst fear), but rather "small brain vessel disease". I've read just about all the posts on this thread and I'm confused. Is this the actual medical name for this diagnosis?, I hear various posters calling it different things. She lives right in Rochester and I've suggested that she schedule a second opinion at Mayo but she doesn't want to go thru another MRI.

I guess I'm reaching out for info? suggestions? I'm not even really sure..what multiple doctors have been calling stress seems to be something much more devastating.