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?

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?

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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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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!

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@kanaazpereira

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?

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Thank you. My dr is 2 weeks out.

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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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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.

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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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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!)

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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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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.

Liked by EES1

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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?

Liked by Lisa Lucier

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Hello – members in this discussion might be interested to know Mayo Clinic Connect has started up a new group exclusively about COVID-19, https://connect.mayoclinic.org/group/covid-19/. The hope is to assist members in connecting and coping during these unique circumstances.

Please follow the COVID-19 group by clicking on +Follow, look at the discussions there and participate. You are also invited to begin a new discussion on any COVID-19-related topic.

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