Cavernoma Alliance UK
316 members97 posts

Wondering if I should seek medical treatment for cavernoma?

I was diagnosed with a 13mm cavernoma in 2010. They realized at that time that it was present in a spinal CT in 2007. My symptoms vary from throbbing headaches that vary in severity from a nagging tug when I remember it is there to sharp and throbbing pain (less frequent). I am seriously concerned progressive memory loss, and inability to focus and recall words that I know are there but just seem out of reach.

2 Replies

Hi Headthrob, are you under a consultant for your cavernoma? Are you being monitored? You need to discuss these problems with your neurosurgeon/neurologist. Also, access the cavernoma alliance forum: and/or cavernoma alliace on facebook. Here you will be able to discuss your symptoms and problems with other sufferers of this condition.

Lisa :)


Continue to seek advice from your neurologist, however don't let them fob you off with painkillers. This is what they did with my husband. They also stated that the medication was giving him the headaches. He has been off work for 14 months now and no further forward. Consultants have now said to Wipe The Slate Clean!! Start Again!! Everyone affected has the right to find out how these cavernoma's grow. There is not enough consultants willing to pursue for decent research.