Hi i was diagnosed with a cave...

[Nicola90]

Hi i was diagnosed with a cavernoma on my brain stem November 2010 (my 20th birthday!) My memory of it is quite hazy as i was on quite alot of medication and being young and hut with the news i tried to block everything out so i apologise if anything in this post is confusing. Anyway my consultant said he wasn't willing to operate because of the depth so another consultant suggested i was refered to Sheffield for gamma knife. I went down in August 2011 and was told about the treatment etc. I remember being told the rays thicken the tumour so it reduces the chance of anymore bleeds. I also got told i would have yearly follow ups at my referring hospital but wont need anymore scans because it would still show? However looking on other forums etc over the years i've learned some people have had 6m-yearly scans to keep an eye. In December at my recent appointment with my consultant i expressed my concern i have started experiencing slight dizziness while lying down and i've been tripping over things a lot more, the weakness in my left side has gradually got worse too. He didn't seem bothered but eventually he said he will speak to the consultant at Sheffield and they came back and said they want me put me for a MRI (still waiting for that appointment 6 weeks later.) I've had quite a stressful year with family illness so this has been playing on my mind since that appointment. Just a couple of questions to anyone that has had a bleed after this treatment... How mild/sever were your symptoms compared to first when diagnosed? And what are the treatment options if there is a bleed? I've read some people go for surgery (depending on severity), some are just monitored even closely but no intervention needed? I might be jumping the gun a bit but i don't have that much confidence in my consultant to be honest. Would be nice to hear peoples personal experiences.

[julebee]

I can fully understand... I had my first bleed at 12, then 16 and the worst one I was 20 and was rushed to hospital and had surgery, cavernoma in pons of brain removed and this left me with left side facial paralysis. I am now 47 and up until 6 months ago had been fit and healthy, then in August...symptoms - off balance, blurry vision, poor coordination.... 2 MRI's later they have found that some of the cavernoma mustn't have been removed when I was 20 and it has slowly regrown. Neurologist doesn't want to operate again so just having MRI's every 12 months to make sure it doesn't change too much. I'm thinking that if you're not feeling confident in your specialist I suggest you seek a second opinion, definitely get an MRI and then weigh up the risks of gamma knife versus surgery...It is all very daunting and you feel quite vulnerable and dis empowered...try to stay positive and strong and believe in your own "gut feel"...get that second opinion...you owe it to yourself...all the best, my thoughts and prayers are with you

[Nicola90 in reply to julebee]

Oh god that sounds awful! Was you offered the surgery when you had your first 2 bleeds? When i had mine i was determined to go down the surgery route as i had in my mind i just wanted it gone so i did refuse to go to Sheffield for a while once it was suggested. My mum and dad understandably was all for Sheffield so they persuaded me to go. I can't remember if i was told gamma knife is a one off treatment or if you can get it more than once. Im not 100% sure if i've had anymore bleeds since 2011 because i have had times where i've felt faint numb and kind of away with it for a few days and a slight sore head but then i've been fine? When i got told to keep an eye for symptoms i've been going by how i first was which basically left me bed bound for nearly 2 weeks then walking with crutches for 3 months. I wasn't told how mild/sever they could be? I lost confidence in my consultant during the first couple of months. On my first admission i was discharged and waiting for my date for surgery then i was admitted 3-4 weeks later with another bleed, he was from overseas and was back home on a family emergency so i seen the consultant that then suggested Sheffield. When my original consultant came back he changed his mind and said Sheffield was the only option as it was too deep to operate. I do think if i never had that second admission would he still have operated? At my follow ups i've felt rushed to leave so haven't had the chance to ask questions etc. I'm going to phone the hospital today to chase up the scan appointment. My dad has seen his consultant had his scan and got his results appointment today all within this month it is a different department however. I do pray it is just me being paranoid but i sometimes feel like a ticking time bomb, it came on quite quick the first time so you never know how things will be week to week even day to day. I guess it what makes us who we are though, shows us how strong we are 😊

[julebee in reply to Nicola90]

Absolutely, stay strong and positive...I have a saying I live by..."Don't wait for the storm to pass..learn to dance in the rain". Re your question about my first 2 episodes... I was only 12 and 16 respectively so they thought I just had bells palsy and gave me quarterzone and then in a couple of weeks I was better...so it wasn't diagnosed until I was 20. The technology now is better than when I had my op, (27 years ago) and I fully understand how you feel re: surgery...and the ticking time bomb. All the best, I hope it all goes well for you...best wishes from me (in Australia)

[EmmaJ70]

Think you need another consultant so that you can ask more questions. I have an inoperable cavernoma in my brainstem but it is too large for gamma knife. I have had another one removed from my brainstem previously. I have yearly scans and plenty of time to discuss the results with my consultant.