Sunday, February 23, 2014

It is never to late to spread your wings!!



You all have heard me say it often... when i first started to write in this blog, I had just been diagnosed with a Cavernous Malformation in the brain.  I never heard of it, did not know what it was, and even my first few post are a bit all over the place as I shared what i would find.  The first neurosurgeon I saw, told me inoperable. As hard as it was to swallow, I accepted that. It's a specialist of the brain, after all, he's got to know what he is talking about.  I didn't really put much thoughts into the importance of finding the best neurosurgeon for one's condition. I mean, I didn't even know what to think! I assume he was right.



As time went by, you  followed my journey from accepting all the changes, since I was going to live like this, to struggling with symptoms, to feeling better, to have a medical emergency, to being told my symptoms were not even related, to agonizing over having the risky surgery, or not to have the surgery, to even accepting death the best I could, to scheduling the surgery, to recovering after surgery, to now finding my new normal.   

I was still in the Rehabilitation center when I started to really focus on reaching out to people. I HAD to!!  If I could do anything to help  even one person to find Dr.Spetzler, or to bring hope, surgery or not, or to encourage people to truly take their own health plan/future into their own hand, i was going to do that!!  The best I could anyway.   


I want to share with you exactly WHY I do what I do, even when I think my words can't go anywhere. Its in the hope that someday, I read something like this:



Hi everyone I just want to say a big thank you to everyone, since joining these support groups I've read stories from members that have made me cry, made me laugh, kept me from going insane, and filled me with inspiration and hope,..... After being diagnosed 8 year ago with an inoperable brainstem cavernoma(called buster) that was bleeding, life has been very strange to say the least, inoperable is a nasty word it makes you live in fear and almost give up hope of some kind of future, I spent the first year recovering from the bleed and trying to come to terms with what I had and that I would always have it there causing me problems and living in fear of the unknown praying it wouldn't bleed again and cause a fatal stroke or worse, but I guess I kind of accepted inoperable because the fear of brain surgery was terrifying for me, you see, my mum died 30 years ago when I was 9 at the age of 42 after having brain surgery on a ruptured aneurysm, so I could deal with inoperable then......HOWEVER, now, 8 years later i've learnt so much more about cavernomas thanks to CAUK and other support groups and the many people I now know with the same condition and after having so many health problems thrown my way for the last few years, i've decided that inoperable is just not good enough anymore I'm sick of living in fear and I want my life back.....so thank you all for your support and your inspirational stories of the journeys you have also travelled and thanks to the advancement in brain surgery skills it seems the INOPERABLE are now becoming OPERABLE....... brainstem surgery used to be a big no no due to the risks but I've read so many cavernoma patient stories lately from people who have had the surgery and with amazing results that I've decided it's time to fight for my diagnosis of OPERABLE!!!!! I wish you all luck and the best possible outcomes in your continued journeys💞💞


This is from a strong and wonderful, gorgeous, kind hearted, upbeat, strong and positive woman called Jane. Love you Jane!! <3 Thanks for letting me share this with everyone :)

She wrote this on the Facebook Cavernoma Support Group.  I am so excited for her to start this whole new chapter of her life. I am thrilled that these support groups are finally thriving and getting new members by the day.  

If you all remember
Akiva, the first person I ever found that had successfully gone thru the surgery and gained back a pretty good quality of life, we teamed up and now have a Facebook Brainstem Surgery Survivors Group. There are 21 of us that either went thru with the surgery with good results, spouses of the ones who did, and 6 members that are either having surgery in the next few weeks/months, or eagerly searching for the best surgeons.  The power of social media is phenomenal, and it is helping a lot of people who otherwise would just think there is no hope for them!!   I NEVER want for anybody to look for a group of support that they can't find. I NEVER want for anybody to ever feel helpless and alone!!  

3 comments:

  1. Your welcome lisanne love you to, thanks for Sharing it, Your blog is an amazing thing that you've shared with everyone and I know it will help so many people who are suffering, i know it helped me so much and definitely helped me come to the decicion to go for surgery, the point you made on having planned surgery with a surgeon who knows what he's doing v's emergency surgery with a surgeon thats never removed a brainstem cav before.....that was a deal breaker for me I'd never looked at it that way before so thank you so much for all your doing lisanne I know you will continue to help many many more <3 xxx

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    Replies
    1. Thank you so much Jane! That was my deal breaker as well, along with my children needed a mother alive, no matter what!!!

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  2. Exactly lisanne I want to be around to see my kids grow and watch all there adventures in life an to see them have there own children to xx

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