I've been on this site a few years and because of my brain injury and reasons related to it I have used different names, some of you will know me as Hannah S, LeslieDilks or currently CindyBurton10
Anyway!!!! After 8 long years I have finally been given the all clear that my AVM has gone. In the consultants words...."Its been obliliterated"
I felt like there should have been a marching band, streamers and balloons dropping from the ceiling. There wasn't of course, but the news was just what me and my beloved hubby needed. The problems caused by the AVM haven't gone but the AVM has....yippee!!!!!!
Then we got these responses from some friends and family.... Will they stop your money, will they take your disabled badge, Can you work now, Can you go out alone, Will you stop being jumpy and afraid of noise, Will the light still affect you. Will you still need your walking stick. Are you going to book a cruise or fly to some exotic island to celebrate etc...etc....
I know it's difficult to understand brain injury and I'm probably being harsh, but I felt shattered and very disappointed when friends/family said the above.....for goodness sake people I've been given the all clear that the AVM has gone. I've still got all my problems, there hasn't been a miracle and everything obliterated.... if only!
I now know the ticking time bomb in my head in Elvis words...."has left the building" The news has been great, but life won't change, we will just continue living life with a brain injury using the strategies learnt from the professionals and stratergies learnt by trial and error of our own making. We will now of course be AVM free. Yippee!!!!
Just wanted to share and also wish you all well !
Take care 😃
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CindyBurton10
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To me you'll always be Jo. What fantastic news Jo ; I'm so, so pleased for you.
Your relief is palpable and your news has brought about a whopping smile from me !
It must feel like a miracle to be rid of that dark cloud from your life. I've no fireworks or balloons m'dear so we'll have to make do with smiley faces !!
You've been such an inspiration and help over the years to me. Long may it continue to others old and new on this site and maybe for myself from time to time 👍
If ever you get to the Doncaster region, I've a cuppa and 🍰 with your name on.
That's nice news to wake up to! Great to hear it and I'm very pleased for you. Easy to understand that although the news is good, your life remains touched by the AVM and will remain so. Keep on keeping on
Andy/Cat, think we 3 should def have cake, cuppa and a good natter. I can't go out alone so you will both have to make your way to me here in sunny Doncaster 👌
It would be quicker for me on the train 'cause I've just learned that Doncaster isn't just up the M62 on the way to Leeds .................. but up to Leeds then S/E for 25+ miles, so about a 2hr drive ! Geography never my best subject.
So I'll need to check the Leeds/Doncaster connections Jo/Andy & get back to you. xxx
Cat, get back to me/us when you can. I do appreciate the travel difficulties , but it woukd be so nice to meet up. Anyway see how you go and if it's mean't to be its mean't to be.
Me again Jo. After words with my pal I'm informed that by the time I'd caught the tram to Manchester, taken the train to Leeds, changed to the Doncaster train then found my way from the station to your house, the motorway would, after all, be the best option.
So I'm wondering if he could come along with me as I no longer drive such distances alone - really not up to it any more. Then we could head off later to his mums in Harrogate.
Sorry if I'm dithering Jo, but I'm easily exhausted and confused since the BI. But so long as I have a co-pilot it should be quite do-able.
Would that be OK with you m'dear ? 'Twould mean an even bigger cake........ xx
Yes gamma knife/radio therapy I had the frame fitted to my head and then into the machine for the radio therapy treatment
The consultant told me that each session of radio therapy works its magic slowly and can take around 1 to 2 years to fully work. The three sessions worked over eight years.
Thanks Jo ; I'll pass that on. It might be a while 'til she's compos mentis, but something she'll no doubt appreciate very much before long.
She needs to recover from a bleed & coiling procedure, and then to reconcile herself to a caesarean delivery for her baby. She's upset that a normal birth is now out of the question. x
Health is pretty meh. Sort of plateaued now. Still deciding if I want to do a postgrad (although I think I've missed my deadline fot it). Job starts on the 20th June!
I'm so delighted to hear your great news that you are no longer a ticking time bomb. HUrrah! 😃🤓
Well done on your patience,this good news has been such a long time coming, and from what I see you have had many challenges to overcome, and will continue to overcome. It's sadly true that many people don't fully understand the sometimes 'Invisible injuries' we have , due to our brain injury. I guess they mean well, but are just not close enough to it to see the full picture and impact it has on our lives.I can see that you are a fighter , I commend you for that strength , I would also like to encourage you to keep taking one day at a time and stay positive.
I'm 5 years since my AVM, and following the first Gamma knife surgery the medics reported it hadn't obliterated the AVM, so I went back for another blast in Sept 15. So I look forward to the day when I too can rejoice in the same good news as you. In the meantime I continue to trust God for my future and thank him for every day that I'm alive. John 3 v 16
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xxx
cursing and brain injury - no bombs, all sanitized
What words do you use when talking about brain injury with children?
