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?

@bellisima

I was diagnosed seven month ago, with 6 cavernous malformation, I went to the ER last Saturday due to severe headache.

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I wonder too…… So many of these things are similar…

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@bellisima

I was diagnosed seven month ago, with 6 cavernous malformation, I went to the ER last Saturday due to severe headache.

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that’s frustrating.

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I have the bigger on the left frontal lobe, but when I had the MRI done the doctor told me that I have in 6 in total so the bigger one is to deep into my brain, can’t do surgery.

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@bellisima

I have the bigger on the left frontal lobe, but when I had the MRI done the doctor told me that I have in 6 in total so the bigger one is to deep into my brain, can’t do surgery.

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Thats what we were told that it is down deep in the brain nothing can be down

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Thank you for your input so much of my husbands problems are listed as small vessel diease of the brain and poly neruophathy ill defined which i take that as meaning they dont have a clue whats wrong so frustrating

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@jc2buds

Thank you for your input so much of my husbands problems are listed as small vessel diease of the brain and poly neruophathy ill defined which i take that as meaning they dont have a clue whats wrong so frustrating

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Google Prevention and management of Cerebral Small Vessel Disease. It is the most current info I have found so far. Good luck

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@jc2buds

Thank you for your input so much of my husbands problems are listed as small vessel diease of the brain and poly neruophathy ill defined which i take that as meaning they dont have a clue whats wrong so frustrating

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Im gonna check it out thank you so much and please keep in touch

Liked by Ali Skahan

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@jeans how did your appoint go at the Mayo Clinic? I have been living with this for 4 years now. I’ve been going to U of M in Ann Arbor, MI. I have a Neurosurgeon, Neurologist and Pain Specialit. Nobody can seem to help me. The Neuosureon doesn’t want to do surgery due to it being deep in my brain. My Neurologist can’t seem to find any meds to help me with the pain and other symptoms so he sent me to the pain management and they have the same problem. Nothing seems to be working on me. The only thing that seems to lessen some of he pain is opioids but they aren’t good for long term. My pain management went opioid free so they want to try Suboxone but I hear it’s a ugly drug so I don’t want to try it. I have never had any type addictions so I don’t know why they want to even try that. I was told by another doctor out of Dearborn, MI that don’t think I will benefit from it. I have pain 24/7. Sometimes it mild sometimes it’s sever. On a pain scale from 1-10 most of the time it’s only a 4-5 but a lot of the time it’s 9-10. When the pain gets to about 6 I start to get dizzy feeling and my left eye starts getting really blurry. By the time the pain gets to around 8 I start to have stabbing pains behind my left eye and get whiteout vision for a few seconds. Do you also experience any of these systems? I think doctor are still trying to figure out how to treat Cavernous Malformations. Most of the doctors have tried to treat my pain like migraines but none of the migraine meds seem to have any effect on this. I’m discouraged because nobody seems to have any answers.

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Hi @sue60 @beck @caregiver49 @jeans @jc2buds @bellisima and @caira,
We haven't heard from you for a little while. I'm writing today not only to check in, but also to let you know that we opened a new group on Connect today dedicated to Cerebrovascular Diseases http://mayocl.in/2nntd8A
Your discussion on Cerebral Small Vessel Disease has been moved to this new group. I hope you're follow the group and stay CONNECTed.

If you have a moment, it would be great to hear from you.
Colleen

Liked by dazza333

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Hi group- my little sister (well I suppose 34yrs old isn’t “little”) received a diagnosis of “small brain vessel disease” just this morning after months of headaches, numerous trips to the ER, trying multiple medications, a referral for a sleep study and finally she demand an MRI. The MRI was completed last Thursday and she received the call today that it’s not a tumor (her worst fear), but rather “small brain vessel disease”. I’ve read just about all the posts on this thread and I’m confused. Is this the actual medical name for this diagnosis?, I hear various posters calling it different things. She lives right in Rochester and I’ve suggested that she schedule a second opinion at Mayo but she doesn’t want to go thru another MRI.

I guess I’m reaching out for info? suggestions? I’m not even really sure..what multiple doctors have been calling stress seems to be something much more devastating.

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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

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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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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