CAVERNOMA

[Oztrax]

Hello everyone,

I hope this is the correct forum.

After nearly 4 years of severe fatigue, chronic headaches, bad vertigo to name a few symptoms,

My latest brain MRI report says: " No acute intracranial pathology is identified. Cavernoma in the right parietal lobe has an uncomplicated appearance"

Was wondering if there are any Cavernoma people here with symptoms and what is your story ?

regards

OZ

[Lady4]

I found this on our UK website:

nhs.uk/conditions/cavernoma/

Did they expand on "uncomplicated presence".

[Oztrax in reply to Lady4]

Thanks Lady4, I assumed "uncomplicated presence" means no bleeding or anything extra. But Cavernomas are uncomplicated in nature, more like a term they would use for a tumour or growth

[Lady4 in reply to Oztrax]

Its not something I was familiar with, so haven't to look up. I haven't heard it mentioned whilst I have been here but thats only a few years.

You could put it in the search box as double check the other forums too.

Hopefully, one of our Community members can shed more light.

But some of the symptoms you mentioned are similar to what members experience, PPPD comes to mind.

[Oztrax]

Thanks Lady4, found this forum which seems to be the correct one: healthunlocked.com/cavernom...

[eviedotty]

I have three cavernoma and they can be symptomatic. I have never heard of them being called uncomplicated in appearance because it’s a lesion of the brain ?

I have had a number of minor bleeds and can report it is a good day if this could be taken seriously so I do wish you good luck.

I went to the optician to get checked out yesterday for a headache that is so nasty it’s taking morphine to control the pain, my eye movements are off the chart. You have six muscles in each eye that control the movement of the eyeball and in my right eye on the outside I now have two dystonic muscles. They stop the eyes from working as a team so to speak. This gives me headaches, dizziness, nausea, unstable on my feet, unable to eat without upsetting my stomach etc

I have a left frontal lobe cavernoma and this leaves seizure activity and the occipital lobe area leaves problems around vision. So for all these reasons I would struggle to understand what they mean by uncomplicated appearance?

Google cavernoma alliance and you will find a support group and information about cavernoma and basically stay as well as you can. Don’t overdo things and rest when you need to. Do find the easy way to do your day to day activities etc I am available for a chat anytime people with cavernoma are different from each other in terms of symptoms etc but they are a good group.

[Oztrax]

Thanks Evie, found that forum. I understand what that headache feels like, although I had a dose of prednisone which took it away on 2 occasions. Maybe uncomplicated means it was not bleeding ?