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?

@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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Im niot sure what the malfirmation are my husband has white matter disease his motor skills have been affected the most i guess most of the doctors we’ve seen are ok they dont offer us mush advice it seems like you have to figure things out for yourself

@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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On a day to day basis he doesnt spend to much time on his feet because his balance is bad and since he sits all the time he tires easy when hes on his feet he doesnt talk to me about how he feels other than to say when hes on his feet he feels like hes swaying even if he doesnt look like he is he gets agitated easily

@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…

@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.

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.

@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

Bellimsa and jcbuds, I followed your post and saw some similarities to what I have faced since 1997, when I was told “I had tuberous sclerosis on the brain.” I took your post and put the following on google cavernous malformations vs tuberous sclerosis– it took me to the NIH site and spoke about TS and Von Hippel Landau Disease. Tuberous Sclerosis is a benign form of cancer, which I’ve had since 13 and am now 77+. It has caused a fluctuation in balance, blood pressure and even inabilities to do certain things. Since I was able at one time to write poetry until it formed between Broca’s area (cognitive part) and Werneikes area (comprehensive part of the brain and calcified. I can speak and sometimes write, but not know what I said or what I wrote and have become more forgetful. The item says “it’s due to some problem with the NF1 gene. You may find time to look further at Tuberous Sclerosis Allianz for greater symptoms and understanding.

Kay

PS: I learned years ago if right that Tuberous Sclerosis mean’t hollow tube.

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

@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

@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

@colleenyoung

Welcome @jeans. I found some detailed information about Cavernous Malformation on the National Organization of Rare Diseases website http://rarediseases.org/rare-diseases/cavernous-malformation/

I used the search function, but didn’t find anyone who had specifically mentioned cavernous malformation on Connect – yet. Thanks for starting the discussion. When is your appointment at Mayo?

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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.

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 Small Vessel Disease in the Brain & Cavernous Malformation 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

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.

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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