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.

I have found that I seem to have some trouble occasionally coming up with a word or a name. I always aced Jeopardy but not anymore! I must be forgetting other things since my wife gently reminds me "remember, I told you ..."

Other than that the only other thing that really bothers me is my balance, although the left side of my face was affected with my first TIA. My doctor did tell me that there is a form of dementia associated with this disease, but I passed my cognitive tests so I'm OK on that front now, but it is scary thinking that something may happen down the road.

Hang in there and live life to its fullest!

REPLY

Thanks keithl56. So good to hear from you.
I’ve had that same problem with memory but its not a big problem. Very common as you get older. I dont worry about it at this point. I do mental exercises to try and help keep my brain working. Theres an app i have on my phone called Elevate that i use.
I dont know if i have had TIA. That terminology hasn't been used. But I've had something according to what they see on the MRI. I haven't been aware of any symptoms. But i have been falling so maybe thats from TIA. I wonder what causes it to happen.
I walk my dog several times a day and i am very careful to watch where i am stepping to avoid my balance from causing me to fall, but i am still wobbly sometimes when doing something like stepping on or off the sidewalk and i stick to firm ground. I wish i didnt have to wait so long to see a neurologist to explain more to me.
Have a good day. Keep in touch. Thanks

REPLY

I would like to know how many patients with high CT scan have been on long term statin>10 years. If so what statin dosage ,name of statin, did you follow a low fat diet and list your ct calcium total score. Just a quick and non scientific poll.

I'll start 40mg of pravastain, >20 years, followed low fat diet CT total calcium score of 1842.

Thanks in advance

Roberta Holmes

REPLY

I had Covid November 2020 and still have cognitive issues. Short term memory, processing math & difficulty with date & time sequencing. My brain MRI showed micro vascular disease. Has anyone else experienced this?

REPLY

I was diagnosed earlier this year after a few falls and TIA's. I am 65 with a very high CAC score (well over 1000) so the mechanism that is causing my CAD is obviously doing the same to my brain. I do a variety of brain challenging activities to try to keep my cognitive ability up but it is scary when I have simple math problems despite being a chemical engineer.

Unfortunately there is no cure or treatment and it is progressive. All you can do is maintain a healthy lifestyle to delay the progression.

Good luck!

REPLY

I don’t think I have the small vessel disease, but I do have narrow vertebral arteries, one completely collapsed 8 years ago leading to a massive stroke at 30 years old, just had scans yesterday and one is completely blocked but has good outflow around it, it’s been a struggle

REPLY

Diagnosed at 50 with small vessel cerebrovascular brain disease with an Arachnoid cyst..now 4yrs later its servere & put on statins also Asprin. Had a bad reaction to statins was only on them 9 days & had to stop them. Have weird & not so wonderful symptoms headaches vision issues fatigue gait & a lot of pain due to cervical spondylosis with osteophytes on all discs from C4 through to C7 with encroachment of nerves ( waiting on neurosurgeon) bladder & bowel issues. Last year had ischemic colitis & bleed out 8 days in hospital...many appointments had & more to come...just wondering if this cyst I have caused alot of my health issues it can not be operated on due to location & how deep it is . Short term memory hasn't been good for a few yrs but long term memory is brilliant...

REPLY
@angelicscripts

Diagnosed at 50 with small vessel cerebrovascular brain disease with an Arachnoid cyst..now 4yrs later its servere & put on statins also Asprin. Had a bad reaction to statins was only on them 9 days & had to stop them. Have weird & not so wonderful symptoms headaches vision issues fatigue gait & a lot of pain due to cervical spondylosis with osteophytes on all discs from C4 through to C7 with encroachment of nerves ( waiting on neurosurgeon) bladder & bowel issues. Last year had ischemic colitis & bleed out 8 days in hospital...many appointments had & more to come...just wondering if this cyst I have caused alot of my health issues it can not be operated on due to location & how deep it is . Short term memory hasn't been good for a few yrs but long term memory is brilliant...

Jump to this post

Hello @angelicscripts and welcome to Mayo Clinic Connect. I am sorry to hear of all of your complications in the last four years since your diagnosis.

You will notice that I have moved your post into an existing discussion on Cerebral Small Vessel Disease so that you may more quickly surround yourself with members who understand. The discussion can be found here for reference: https://connect.mayoclinic.org/discussion/i-have-vascular-small-vessel-disease-that-so-far-just-has-caused/

Members such as @keithl56 @kariulrich @hopeful33250 @helenfrances @avmcbellar and @oldsuzanne55 may be able to join and provide some much needed support.

Have you already consulted on your options for your cyst or just beginning that process?

REPLY
@angelicscripts

Diagnosed at 50 with small vessel cerebrovascular brain disease with an Arachnoid cyst..now 4yrs later its servere & put on statins also Asprin. Had a bad reaction to statins was only on them 9 days & had to stop them. Have weird & not so wonderful symptoms headaches vision issues fatigue gait & a lot of pain due to cervical spondylosis with osteophytes on all discs from C4 through to C7 with encroachment of nerves ( waiting on neurosurgeon) bladder & bowel issues. Last year had ischemic colitis & bleed out 8 days in hospital...many appointments had & more to come...just wondering if this cyst I have caused alot of my health issues it can not be operated on due to location & how deep it is . Short term memory hasn't been good for a few yrs but long term memory is brilliant...

Jump to this post

Hello @angelicscripts,

I'm really sorry to hear of the multiple health problems you are having now. I can see that you have tried different medications and treatments.

You said, "waiting on the neurosurgeon. Are you now considering spinal surgery to correct the disc issues?

You mentioned a bad reaction to the statin you were taking, If you don't mind sharing more, what type of side effects did you have?

I look forward to hearing from you again. Will you post updates?

REPLY

Good morning and thank you for replying

I've already seen a neurosurgeon in 2019 & it was a wait and see, had another MrI April 2021 due to Pulsating Tinnitus starting, cut long story short visit ENT to be told its the blood vessels squashed due to neck which are vibrating against ear drum bloody awful somedays! Audiology give white noise earing aids try cut the sound down but to be honest after a while ears become painful .As for the statins I was prescribed Artovastatin which lead to servere muscle pain in calves & arms & pins needles hands & generally feeling lousy all over more than usual.
Having not got high blood pressure or cholesterol was dubious in taking them ...however they have given me Simvastatin to try not done so yet...
Arachnoid cyst was diagnosed by ENT due to Bells Palsey which my mother had also , was seen by a Professor of Neurosurgery who would not operate due to size & location & would lose the essence of who I am.However it explained alot of the symptoms I have had most of my life ...I get on with life even though its taken alot away ...not one for sympathy but understanding..Julie

REPLY
Please sign in or register to post a reply.