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.

@maria7521

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.

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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!

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@maria7521

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.

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

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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.

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@dorac

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.

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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?

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@dorac

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.

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@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

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

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@allysaco

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

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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?

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@allysaco

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

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Hello @allysaco,

Last summer you posted about your husband's recent diagnosis. I hope he is doing well. When you have time will you post an update?

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I had an incident a several weeks ago and as a result had a battery of cardio and neuro test (I already knew I have severe CAD). My EEG came back as abnormal so I had to have a brain MRI 2 days ago. Due to the holiday I haven't yet spoken with my neurologist. The MRI indicated chronic microvascular ischemia in my left frontal corona radiata. It also found a 3/4 inch cyst! I know that this means that lack of blood flow has killed off some brain cells but have no idea what this portend for the future. I already have a heart CAC over 1000 and bilateral carotid stenosis so I know that from a vascular health standpoint that these could all be related. I am otherwise healthy and active and only 64 years old.

I have been having some headaches, some loss of balance, and minor recall issues. Since the area of the brain affected is associated with cognitive ability I don't know if there is any relationship.

It doesn't seem that there is really anything to do other than maintain the same regimen I follow for my cardio health. Does anyone know what the usual progression of this disease is? I just started building a new house in Hilton Head and this news is a bit unnerving.

Thanks!

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@keithl56

I had an incident a several weeks ago and as a result had a battery of cardio and neuro test (I already knew I have severe CAD). My EEG came back as abnormal so I had to have a brain MRI 2 days ago. Due to the holiday I haven't yet spoken with my neurologist. The MRI indicated chronic microvascular ischemia in my left frontal corona radiata. It also found a 3/4 inch cyst! I know that this means that lack of blood flow has killed off some brain cells but have no idea what this portend for the future. I already have a heart CAC over 1000 and bilateral carotid stenosis so I know that from a vascular health standpoint that these could all be related. I am otherwise healthy and active and only 64 years old.

I have been having some headaches, some loss of balance, and minor recall issues. Since the area of the brain affected is associated with cognitive ability I don't know if there is any relationship.

It doesn't seem that there is really anything to do other than maintain the same regimen I follow for my cardio health. Does anyone know what the usual progression of this disease is? I just started building a new house in Hilton Head and this news is a bit unnerving.

Thanks!

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@keithl56 You are unnerved by the news that you have been diagnosed with chronic microvascular ischemia in the left frontal corona radiata. You are wondering what the progression of the disease is. I'd like to invite active members of the Stroke & Cerebrovascular Diseases group like @kariulrich @hopeful33250 @helenfrances @avmcbellar @oldsuzanne55 These members may be able to help answer your question.

May I ask when you will be able to speak with your provider?

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