Small Vessel Disease in the Brain & Cavernous Malformation

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?

@colleenyoung

Hi @lmg1128 and welcome to Connect. Brain small vessel disease actually refers to a group of pathological processes that affect the small blood vessels of the brain. I’m not surprised at the confusion with the term. Even the medical professional and researchers use different terms for describing the disease and its features. You may also see it referred to as cerebral small vessel disease (CSVD). From what I’ve read, cerebral small vessel disease is most commonly related to aging and hypertension.

No doubt your sister and you have a lot of questions about the diagnosis, treatment options and what will happen next. Experts at the Mayo Clinic can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. I encourage her to contact Mayo Clinic in Rochester. She will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Cerebrovascular access program.

She may not have to have another MRI when seeking a second opinion. Doctors will look at her recent imaging studies and medical records.

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@colleenyoung -thank you so much!

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@colleenyoung

Hi @lmg1128 and welcome to Connect. Brain small vessel disease actually refers to a group of pathological processes that affect the small blood vessels of the brain. I’m not surprised at the confusion with the term. Even the medical professional and researchers use different terms for describing the disease and its features. You may also see it referred to as cerebral small vessel disease (CSVD). From what I’ve read, cerebral small vessel disease is most commonly related to aging and hypertension.

No doubt your sister and you have a lot of questions about the diagnosis, treatment options and what will happen next. Experts at the Mayo Clinic can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. I encourage her to contact Mayo Clinic in Rochester. She will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Cerebrovascular access program.

She may not have to have another MRI when seeking a second opinion. Doctors will look at her recent imaging studies and medical records.

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You’re very welcome. Given that this is a condition usual associated with aging, I’m sure you have lots of questions with respect to your sister’s diagnosis especially given her young age. What has the doctor told her so far? Does she need to have further testing to confirm particulars about the diagnosis? What are the next steps?

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@colleenyoung

Hi @lmg1128 and welcome to Connect. Brain small vessel disease actually refers to a group of pathological processes that affect the small blood vessels of the brain. I’m not surprised at the confusion with the term. Even the medical professional and researchers use different terms for describing the disease and its features. You may also see it referred to as cerebral small vessel disease (CSVD). From what I’ve read, cerebral small vessel disease is most commonly related to aging and hypertension.

No doubt your sister and you have a lot of questions about the diagnosis, treatment options and what will happen next. Experts at the Mayo Clinic can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. I encourage her to contact Mayo Clinic in Rochester. She will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Cerebrovascular access program.

She may not have to have another MRI when seeking a second opinion. Doctors will look at her recent imaging studies and medical records.

Jump to this post

New to this site. My cat scan I’ve recently had shows microvascular disease in the parietal & left frontal lobes. No other tests doe to poor very rural care. Contacted Mayo wanting to obtain another opinion & received a letter 7 days later with a blow off letter. Apparently Mayo doesn’t care to help anyone with microvascular disease. I have Medicare & Blue Cross so insurance was not an issue. Very disappointed in their attitude.

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@colleenyoung

Hi @lmg1128 and welcome to Connect. Brain small vessel disease actually refers to a group of pathological processes that affect the small blood vessels of the brain. I’m not surprised at the confusion with the term. Even the medical professional and researchers use different terms for describing the disease and its features. You may also see it referred to as cerebral small vessel disease (CSVD). From what I’ve read, cerebral small vessel disease is most commonly related to aging and hypertension.

No doubt your sister and you have a lot of questions about the diagnosis, treatment options and what will happen next. Experts at the Mayo Clinic can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. I encourage her to contact Mayo Clinic in Rochester. She will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Cerebrovascular access program.

She may not have to have another MRI when seeking a second opinion. Doctors will look at her recent imaging studies and medical records.

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Hi, @confusedantb and welcome to Connect.
I’m sorry to hear that you had difficulties receiving an appointment at Mayo Clinic. Unfortunately because Mayo Clinic has more requests for appointments than available openings, other factors do come into play. Appointments at Mayo Clinic are prioritized on the basis of medical need. Availability depends on the nature and urgency of the problem and Mayo Clinic’s ability to help (as determined by a Mayo Clinic doctor). The complexity of the medical condition and, for less complex conditions, the availability of care closer to home are also factors.
Were you given a reason?

Confusedantb, we look forward to getting to know a bit more about you. What symptoms or concerns led to your getting a CT scan?

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Need help for anyone knowledgeable or who experienced SVD . Was diagnosed thru brain mri 3 weeks ago . Pain is progressing attacks ranges fm minutes to hours. Was also diagnosed with TN pain occurs at the same timewith splitting headaches at times.

my memory is wiped out when the pain is too much to bear. I get disoriented i cant figure out direction or mental maps. Memories would come back only after a while and i would have to retrace why iended up on the spot prior to splitting headache attack

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@rakierin

Need help for anyone knowledgeable or who experienced SVD . Was diagnosed thru brain mri 3 weeks ago . Pain is progressing attacks ranges fm minutes to hours. Was also diagnosed with TN pain occurs at the same timewith splitting headaches at times.

my memory is wiped out when the pain is too much to bear. I get disoriented i cant figure out direction or mental maps. Memories would come back only after a while and i would have to retrace why iended up on the spot prior to splitting headache attack

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Hi @rakierin Welcome to Connect.
I moved your message to the Stroke & Cerebrovascular Diseases group, specifically to this discussion about small vessel disease so that you can meet other members like @sue60 @beck @caregiver49 @jeans and others.

There is also an active discussion about Trigeminal Neuralgia* here that you may wish to join: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/

Rakierin, What treatment or management plan has your doctor recommended?

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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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Here is a website established by the Baca family that will provide some information and contact with others with CCM. https://bacafamily.org/baca-family-history/

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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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