Recently diagnosed

[LunaL]

Following a year of migraine like symptoms, my Neurologist called me yesterday and told me I had one raspberry shaped cavernoma which was picked up in my MRI scan. He said it was an incidental find and wasn’t necessarily linked to my headaches. I’m feeling a bit shocked and not sure what to make of it all. To top it off I have to wait for 2 weeks before I get to see him to ‘talk through’ as he says, Any advice on how to stop worrying about it till then, woukd be great!

[PippaMayb]

If your neuro said it was incidental, it really probably was. Cavernomas are actually really common and more often than not, chill out in your brain without issue. Also, the fact you are waiting (as horrible and painful and stressful as it is and you just want to kidnap your doctor so you can have a chat) 2 weeks to have an appointment is also a sign in your favour. If there was a bleed or anything troubling them, you would either be seen instantly or told to go to your nearest A&E. When it comes to the brain, doctors are not going to f**k about.

*I am not a medical professional, but have had a Cavernoma for 20 years*

[Jeeg]

Hi Luna, I agree with Pippa that it doesn't look like you had a bleed. If your symptoms are migraines only, then as your doctor said they don't have to be necessarily linked to the cavernoma. Do you know where in the brain the cavernoma is?

Good luck

Vincenzo

[LunaL in reply to Jeeg]

Thanks everyone. Gave my Neuro a call out of worry, and he didn’t seem too concerned. It’s in the right anterior striatocapsular region. Apparently I also have a few tiny other cavernomata in the inferior frontal and temporal lobes.

[flowers24]

I to was diagnosed acidently and have a raspberry x I was so scared at fist but that was 2016 so don’t worry you can be born with them