Left frotal cavanoma

[75john]

Im a 42 year old male who has a left frontal cavanoma.was reading a post on here about a lady same age as me who seems to have the same type as me.iv never sufered from headaches or migraine until 2yrs ago i woke up stone deff in my left ear and numbness down the side of my face.2weeks later i had the most horendous migraine i felt like i was going to die.i saw my gp she thought id got a bleed on the brain so rushed to AE had an mri which confermed cavanoma.they said it was small but had and does bleed.went to see spiecalist who said they did not want to remove it.it was safer to leave it alone.i only suffer migraine about once a month on average there is no warning sign.sometimes they last a couple of hours longest iv had was 3days.and they are brutal.even when gone it takes a day or 2 for my head to get back to normal.i take amertriptaline tramadol naproxin and if to bad oxycodine for break through pain all of which i feel just boxes up the pain dose not take it away.anyway just thought i would share my story.

[Sarrah17]

Hi there,

Thank you for sharing.. What you have just wrote does help me a lot. I am often worried that my cavernoma is bleeding when I suffer from a weird type of headache and I am not sure whether I should see a specialist immediately but from I've just learnt from you, the headache should be more severe... I am sorry that yours are that bad... My headaches are just annoying and I feel a little bit disoriented, but I don't really have to take any painkillers. I have noticed that for some reason, it's getting worse when I am exposed to stress for an extended period of time.

[75john in reply to Sarrah17]

Hi

How often do you have migraine? Mine are not so often thank god do not think i could live with that sort of pain on a regular basis.i get what yours saying about been disoriented.the only warning i get for migraine is sometimes my face will go numb.i wish i could get an mri or ct scan when having the migraine to see if the bleeding is causing it.thanks for your reply nice to here from people who have same symptoms

[Sarrah17 in reply to 75john]

Hi,

Thank you for your reply - it's good indeed to hear from people who are suffering from the same condition. I have noticed in the last 6 months that I am getting headaches when I work in the garden with my head down. I have also noticed that I can't tolerate sun as much as I used to. It's not my forehead, it's the top of my head that hurts like there is not enough space for my brain... I can live with it for now and I try not to think about it too much but of course it's worrying me. Have you been advised what to avoid? My doctors didn't advise me anything, all my knowledge comes from the Internet...

[75john in reply to Sarrah17]

Sorry to hear you have problems in the garden and the sun.i like you was given little advice on the matter.at first they wanted to take it out then they told me because i dont have epalepsy it was safer to leave it alone.i get what you saying about not enough room for your brain.i sometimes feel like my head at the top is sfuffed with cottonwool.i try not to worrie about it to much.i pannic a little when having migraine.just had another mri just waiting for results.you can ask your doctor for an mri periodicly to ease your concernse😊

[EmmaJ70]

Hi - are you both members of Cavernoma Alliance UK (CAUK)? It's free to join and can be found using an internet search engine. Are you also on Facebook because if you join CAUK then there is a secret Facebook page they can add you to where lots of people share experiences.

[CAUKcommunity16 Partner]

Hi both. Did you join Cavernoma Alliance UK? If not, there is lots of support and information available there for you. visit cavernoma.org.uk to find out more ...

[DumindaSA]

Hi John & Sarrah

my also having same condition & some doctors saying wait & see, one physician said go for Gamma knife, when searching for GK options some places saying no need a treatment now, some places saying can treated now.

just curious what to do, worrying is there any blood leak could severe damages.

thank you for sharing your experiences.