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AVM Survivors Network

Back again

I was a member of this site many moons ago and found the information and support really useful. So now, after a new round of symptoms I’m back again to hopefully get some support and help others where I can.

My story to date:
I had a cerebral left-side fronto-parietal AVM diagnosed around 1994. No bleed at that point but it was of a size that needed treatment and as it was inaccessible for surgery then GKS was deemed to be the best option.
I had SRS in 1996 at the Royal Hallamshire hospital in Sheffield, UK. This wasn’t sufficient to treat the whole AVM so I underwent a 2nd SRS in 2001 - I was eventually told my AVM had been thrombo-obliterated.
Unfortunately, the treatment left me with a right side hemiparesis.
In 2007 I started having symptoms of numbness in my right arm. After various tests this turned out to be a large cyst on the AVM post-radiation site.
In 2010 I underwent a Craniotomy again in Sheffield to marspualise the cyst. The op went well and recovery was good but the benefits gained from the marsupialisation didn’t last. However, although I was disabled and still had focal seizures, everything was pretty stable and I just got on with my life, grateful that I had a good life with a great family.
Fast forward to the end of 2019 - my seizures are now not controlled, they’ve started to become generalised not focal. And - I’ve lost total use of my right hand and arm. Guess which one was my dominant hand??
I had an MRI on 1st Feb which has shown that I’ve had a largeish sized bleed. They’re not sure where from as my brain has a mass of scar tissue/post radiation necrosis.
I’m booked in for angiography next week and then the radiologist and neurosurgeon will review it and then we’ll decide on a plan of action.
So here I am - back again, facing uncertainty and trying to be optimistic!

Looking forward to catching up with you all.

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Welcome back VickiC… So sorry to hear what your going through but I hope all goes well with your angio and that they get a better look at whats going on so they can address it where required… please stay positive and I will be sending prayers your way so please keep us posted… God bless!

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Thank you Adrian. Even just reading through some of the posts in this community has helped me this last week.

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Vicki,

Wow! You’ve gone through a ton and it sounds like you’ve got a lot in front of you. I’m sending my best, positive thoughts your way but you sound remarkably calm about it, trying to read a little between your words. That strikes me as remarkable and important. I hope it helps to carry you on.

You remind me of someone else on here who is also trucking on, in the face of considerable adversity.

Very best wishes,

Richard

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Thank you Richard. And I assure you that I’m not always calm and collected (just ask my husband & sons :smiley: )!!

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Me neither but I think you’re doing brilliantly in the most difficult of circumstances!

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Wishing you best wishes and hopeful recovery in the future. I feel like I’m still living a nightmare despite my avm being embolized and it being successful but leaving me left sided hemiparesis. I cannot imagine the hell you’re going through now :confused: I just know if I feel like giving up now that’s it’s been 3 years and I still try my hardest in PT, I don’t know what I would do if I was in your shoes. You’re definitely my hero dear

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Hi Vicki:

I just want to welcome you back to the Group. Know that we are still here to support and encourage you. We’re also good at letting AVM-ers vent their frustrations without judgement. We’re here whenever you need us.

Sharon D…

Thinking about you (and Teiry and @Cornishwaves). How are you getting on?