Cerebral Small Vessel Disease

[klogs17]

Hi everyone. After a 16 month wait for an ENT appointment for ear pain and tinnitus, I found out I had severe hearing loss in one ear. This meant being sent for a MRI from which I was diagnosed with Cerebral Small Vessel Disease (cSVD) in December 2022. I was told it is very unusual for someone my age (51) and am finding it difficult to get much information without google showing me scientific studies that go right over my head.

GP put me straight on aspirin and statins and I am really struggling with it all. I’m managing to keep my T2 diabetes (diagnosed August 2021) under some control HbA1c 42 in December 2022.

Really want to get to the bottom of whether chronic insomnia with depression and anxiety, off and on, for 10 years has contributed to my diagnosis. Anybody else here with cSVD?

 

[AndBreathe]

Hi everyone. After a 16 month wait for an ENT appointment for ear pain and tinnitus, I found out I had severe hearing loss in one ear. This meant being sent for a MRI from which I was diagnosed with Cerebral Small Vessel Disease (cSVD) in December 2022. I was told it is very unusual for someone my age (51) and am finding it difficult to get much information without google showing me scientific studies that go over right my head.

GP put me straight on aspirin and statins and I am really struggling with it all. I’m managing to keep my T2 diabetes (diagnosed August 2021) under some control HbA1c 42 in December 2022.

Really want to get to the bottom of whether chronic insomnia with depression and anxiety, off and on, for 10 years has contributed to my diagnosis. Anybody else here with cSVD?

Hi there. I'm sorry I don't have any knowledge or experience to share with you.

I would usually suggest looking on Health Unlocked, but I searched to see if there was anything on there, and it looks like you may already have reached out there? Is your GP going to be looking after you in relation to this condition, or will you also be under the care of a hospital clinic? If you have hospital contacts, I wonder if they know of any support groups nearby where there might be some helpful lived experiences.

Well done of keeping your T2 in check. Stress can raise the numbers a bit. I know it can for me. Just stick with it. I'm sure like so many conditions keeping yourself in decent shape will be helpful.

 

[klogs17]

Hi there. I'm sorry I don't have any knowledge or experience to share with you.

I would usually suggest looking on Health Unlocked, but I searched to see if there was anything on there, and it looks like you may already have reached out there? Is your GP going to be looking after you in relation to this condition, or will you also be under the care of a hospital clinic? If you have hospital contacts, I wonder if they know of any support groups nearby where there might be some helpful lived experiences.

Well done of keeping your T2 in check. Stress can raise the numbers a bit. I know it can for me. Just stick with it. I'm sure like so many conditions keeping yourself in decent shape will be helpful.

Thank you for the reply. Yes I reached out on Health Unlocked too. GP said “what’s your end game?” with the questions I asked and gave me more meds and the usual lifestyle advice. Felt cast aside and unsure where to go after that. May have to get myself back on Facebook.

 

[Outlier]

I've just had a scan following an unusual hearing loss pattern. I don't have the results yet, but once I do I will revisit this thread if appropriate and share anything helpful.

I used to take part in extreme sports, hence have been concussed rather a lot, but whether this will come up once the results are through I don't know.

 

[AndBreathe]

Thank you for the reply. Yes I reached out on Health Unlocked too. GP said “what’s your end game?” with the questions I asked and gave me more meds and the usual lifestyle advice. Felt cast aside and unsure where to go after that. May have to get myself back on Facebook.

Has your GP given you any information or helped you understand anything about the future? I don’t know what if anything you might expect, but in your shoes, I’d be back to the GP to say you’re a little over the unexpected result, but that you need some help to understand what it means and what you should expect moving forward.

If he doesn’t know or is useless then ask for a second opinion - not necessarily on the diagnosis, but for further information

you cannot engage in your treatment, if you don’t understand the diagnosis or the implications it brings to your life.

 

[klogs17]

Has your GP given you any information or helped you understand anything about the future? I don’t know what if anything you might expect, but in your shoes, I’d be back to the GP to say you’re a little over the unexpected result, but that you need some help to understand what it means and what you should expect moving forward.

If he doesn’t know or is useless then ask for a second opinion - not necessarily on the diagnosis, but for further information

you cannot engage in your treatment, if you don’t understand the diagnosis or the implications it brings to your life.

I’m talking to my GP once I get my bloods checked next week and will be armed with loads of questions for the 10 min telephone call. Hoping they’ll refer me to a specialist in the field (neurology?).

Edinburgh and Cambridge universities have significant studies on cSVD but mostly involving those who’ve had a stroke or have dementia. Tempted to reach out to their departments for more information.

 

[AndBreathe]

I’m talking to my GP once I get my bloods checked next week and will be armed with loads of questions for the 10 min telephone call. Hoping they’ll refer me to a specialist in the field (neurology?).

Edinburgh and Cambridge universities have significant studies on cSVD but mostly involving those who’ve had a stroke or have dementia. Tempted to reach out to their departments for more information.

I did a tiny bit of reading and it seems many older folks have cSVD and never know about it, and are potentially diagnosed when they have a stroke of such likes and the relevant scans are done.

 

[klogs17]

I did a tiny bit of reading and it seems many older folks have cSVD and never know about it, and are potentially diagnosed when they have a stroke of such likes and the relevant scans are done.

It’s in the limited reading material that says it can lead to stroke or dementia (as can so many other illnesses) that I want more advice. Also now been given a risk score for cardiovascular disease, feel like a ticking time bomb. And I only wanted to know what was wrong with my ear

 

[AndBreathe]

It’s in the limited reading material that says it can lead to stroke or dementia (as can so many other illnesses) that I want more advice. Also now been given a risk score for cardiovascular disease, feel like a ticking time bomb. And I only wanted to know what was wrong with my ear

Everyone on this forum with have a risk score for cardiovascular disease. It’s something our GPs do once we get a few miles on the clock. This is the website. You can run it for yourself: https://qrisk.org/three/

Whatever your risk score is, it is only that, a risk score, and compares you agains others of a similar age, with and without things like diabetes, or high blood pressure etc.

it is really important that whatever that risk number is, even 99% that 1% will be unaffected.

it is HIGHLY unlikely your score would be anything like the number I suggested there, but you can easily find that out if you want to.

in terms of my own score, I have zero idea what my GP enters, because the score I return and the score he does never match. He will have no idea what I weigh, because from memory I was last weighed by the surgery about 2014. He has never asked me abou family members cardiovascular event histories etc, so frankly, I can’t get too engaged with it.

Were I in your shoes, my major objective would be to be a healthy weight, not smoke (I never have), ensure my blood pressure was in a great place and remain as fit and active as I could. Of course, you have to get your information and assess it for yourself, but whatever you do, stay positive, do good things.

 

[Prancy]

Hi everyone. After a 16 month wait for an ENT appointment for ear pain and tinnitus, I found out I had severe hearing loss in one ear. This meant being sent for a MRI from which I was diagnosed with Cerebral Small Vessel Disease (cSVD) in December 2022. I was told it is very unusual for someone my age (51) and am finding it difficult to get much information without google showing me scientific studies that go right over my head.

GP put me straight on aspirin and statins and I am really struggling with it all. I’m managing to keep my T2 diabetes (diagnosed August 2021) under some control HbA1c 42 in December 2022.

Really want to get to the bottom of whether chronic insomnia with depression and anxiety, off and on, for 10 years has contributed to my diagnosis. Anybody else here with cSVD?

How are you doing?