Cerebral Small Vessel Disease

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 ir 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?

Was in meningioma group here. Just found out I have vasculitus now. What fun! Meningioma benign and calcified. Cavernoma very small. Both they think there for a long time. No symptoms. Found as result of when I bumped my head and had MRI. got big red rash on leg and smaller on sides. Thought from rocking baby and the resulting heat. Biopsy showed vasculitus. Took blood to determine more. On pins and needles again. Any correlation between all of these?? Thanks! Misery loves company. Give me some! 🙂

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I have a friend who was recently diagnosed with cavernous. I noticed a change in her personality, she has trouble with her thinking at times, she also has trouble with fatigue. I am concerned about her. Does anyone have any or all of these issues.

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Hi @lenape, I add my welcome to you as well.
I moved you posts about cavernous to an existing discussion group about “Small Vessel Disease in the Brain & Cavernous Malformation.” Click VIEW & REPLY at the bottom of the email notification to see all the past posts and meet fellow members talking about cavernous malformation and its effects. There are also some great resources shared between members about fatigue and cognitive thinking related to the disease.

Some members, like @caregiver49, have talked about fatigue. Others, @jeans and @sue60 have mentioned balance issues and falling.

Lenape, I encourage you to read through the past comments to learn about this slow progressing disease and to ask questions to the other members. Does your friend have any issues with balance?

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@ees1

Was in meningioma group here. Just found out I have vasculitus now. What fun! Meningioma benign and calcified. Cavernoma very small. Both they think there for a long time. No symptoms. Found as result of when I bumped my head and had MRI. got big red rash on leg and smaller on sides. Thought from rocking baby and the resulting heat. Biopsy showed vasculitus. Took blood to determine more. On pins and needles again. Any correlation between all of these?? Thanks! Misery loves company. Give me some! 🙂

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Glad you joined this discussion, EES1. Sorry to hear about the additional diagnoses adding to your complex medical issues of meningioma, cavernoma and now vasculitis. Of course, waiting for test results is hard. When is your follow-up to discuss the test results and next steps?

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Hello everybody I am 55 years &as already mentioned I have been suffering from CSVD, Cerebral atrophy with sleeping & movement disorder. Last night my head was hit at a stone slab in the middle of the head & since then headache continues. When I walk i plan to put to my leg at one place but the leg goes to another place. Is it gait walking? How can I control this. No coordination with my brain and body. What is the remedy? How can I assess the damage without taking MRI. I have already taken 2 MRIs. Is it safe to take more MRIs? Kindly explain.

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@venki

Hello everybody I am 55 years &as already mentioned I have been suffering from CSVD, Cerebral atrophy with sleeping & movement disorder. Last night my head was hit at a stone slab in the middle of the head & since then headache continues. When I walk i plan to put to my leg at one place but the leg goes to another place. Is it gait walking? How can I control this. No coordination with my brain and body. What is the remedy? How can I assess the damage without taking MRI. I have already taken 2 MRIs. Is it safe to take more MRIs? Kindly explain.

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Hi Venki, that sounds like a nasty blow to the head. Only a medical professional can tell you the best way to assess the damage. Knowing your medical history, current condition and the number of diagnostic tests you’ve had and when, your neurologist will discuss with you the benefits and risks of how to assess the damage.

Did you see your doctor or go to ER after your fall?

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Hi I am 42 and just been diagnosed with SVD, it was found in MRI, my only treatment is aspirin, I also suffer from chronic fatigue syndrome, my head is constantly fuzzy with extreme fatigue worse than before with headaches also have problems with my right side, my doctor can’t tell me how this disease will progress or saying much at all to me! Any help and advice on this disease would be much appreciated! My cholesterol and blood pressure perfect, don’t smoke and haven’t drank for 6 months! Understand it can cause stroke and dementia!

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@colleenyoung

Welcome @jc2buds. This is what I love about Connect! @jeans posted a question about Cavernous Malformation. While I couldn’t connect her with a past member or recent conversations, you saw her message and jumped in.

@jc2buds Kerry, did I understand correctly that both you and husband have Cavernous Malformation or just your husband? You also mention lifestyle change you can make to slow the progression of disease. What changes have helped you?

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How is your husband doing by now? I am 58 and diagnosed with SVD and quiet frankly very fearful. I'm dizzy much of the time and stutter off and on for periods, then it seems to get better. I hope he is doing okay……

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@colleenyoung

Welcome @beck!
I moved your message to this thread about cerebral small vessel disease started by @sue60. Great input @irvkay312!

Beck, when is your next appointment? What are the next steps?

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I have severe white matter disease also. I had no idea until I got a concussion in a golf cart accident. A brain scan led to an MRI which then led me to Mayo Clinic. I am 68 years old an extremely active. I teach and interpret sign language and am in a band at church. Since my diagnosis I started on a fat-free vegan diet and started learning the ukulele and Spanish. I don't feel like this diagnosis is a death sentence bur rather a new way of looking at my life. I do more, not less. I love more, not less. I want to start a blog about this because so many people do see it as a death sentence when really none of us have a guarantee that our lives won't end TODAY on our way to the store or crossing the street.

I plan on living the dickens out of my life, however long or short it may be. My husband and I have set upon upgrading our home to be a safer place for me and a nicer one. We moved my office into the Florida room so I can look at my newly landscaped back yard while I work. I wonder why I did not always live with this new improved attitude toward life!

I got back to Mayo Clinic in November or December and I'm planning to knock their socks off with my cognitive testing. I know this white matter will catch up with me sooner or later but in my 'in-between' time, I'm living life.

Good luck and may God bless us all!

Nancy

Liked by Lisa Lucier

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@colleenyoung

Welcome @beck!
I moved your message to this thread about cerebral small vessel disease started by @sue60. Great input @irvkay312!

Beck, when is your next appointment? What are the next steps?

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Welcome to Connect, Nancy (@nancywootten).
Somehow I missed your first post on Connect. What an entry. You're attitude and actions are admirable, and we're glad you're here.
Am I understanding correctly that you will be returning to Mayo Clinic in November or December to redo some of the cognitive testing that you did at your first visit? In addition to grabbing life by the tail, enjoying it and keeping up with work, are you also doing specific cognitive exercises? Or is that unnecessary with your level of activity?

Liked by Lisa Lucier

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@bellisima

Does anyone has been diagnose with carvernos malformation

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Hello!! Yes I am doing all I can. I went on a strict fat free vegan diet. It was suggested by neurologist that I learn a language and music. I am learning Spanish and Ukulele. Both are fun and challenging!!! I am doing everything I can do and not worrying about the rest. I’m still managing my own business and teaching sign language. Life is good.

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@colleenyoung

Welcome @jc2buds. This is what I love about Connect! @jeans posted a question about Cavernous Malformation. While I couldn’t connect her with a past member or recent conversations, you saw her message and jumped in.

@jc2buds Kerry, did I understand correctly that both you and husband have Cavernous Malformation or just your husband? You also mention lifestyle change you can make to slow the progression of disease. What changes have helped you?

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My doctors, all six, recommend fat free diet. It’s very simple but you’ll need an insta pot! Lol!

I have very little problems eating out. I’ve learned to talk to the chef and they love helping me.

I was told brain games were not helpful but to learn a language and music. I’m learning Spanish and ukulele. I think a good attitude is our primary defense . We have already taken steps to improve quality of life by having a really nice fence put up and all new landscaping done. I’m making my home a beautiful place to live!!!! Don’t worry. It’s a waste of life. Live and live all you can while you can.

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@colleenyoung

Welcome @beck!
I moved your message to this thread about cerebral small vessel disease started by @sue60. Great input @irvkay312!

Beck, when is your next appointment? What are the next steps?

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Hi Coleen!

All the neurologist I talked to at home and Mayo said a no fat diet was best but that it was not sustainable. They just don’t know me very well at all! I’m a fat free vegan Natzi!! They also suggested another foreign language so I am learning Spanish. Music was suggested so I am learning ukulele. It is a blast. I even joined a beach ukulele group. It’s been a year and I feel no different at all. Just saw local neurologist and I passed all his cognitive tests. That was very exciting for me. I’m living life!!!!

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At 71, I have similiar issues with balance and fatigue. I steadily increase the use of my cane. It appears my body is slowly wearing out which is a long way from where I was in the younger days. I blame this on Agent Orange exposure during RVN time but, but and but. I can drive but exercise is almost impossible except from a couch. Laying down is immensely more comfortable while walking becomes increasingly diffcult within minutes. Good Luck

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@bellisima

Does anyone has been diagnose with carvernos malformation

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@nancywootten

All of your activities are very impressive! I just recently finished taking a sign language class. It is a great activity for the mind and the hands! Between your eating habits and lifestyle you sound like you have found ways to be happy. Congratulations on that.

Teresa

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