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AVM Survivors Network

My Update

Hi there everyone… I’ve scarily not been on here in 6yrs or posted anything, I’ve visited read topics but never left a outcome of my Surgery, well here goes

In February 2015 1.5 yrs after discovery of my AVM… I finally managed due to being mentally stable to go through with my surgery, I was taken in day before UK 6 nations Rugby kicked off missed that yrs rugby :rugby_football: was slightly gutted but never missed much NFL.
I ended up in surgery for over 10 hours my AVM was much larger than expected and wrapped around my temporal love, before surgery I unfortunately got diagnosed epileptic /seizure activity not grande maul but pretty bad.
So after over 10 hours surgery I woke up 2 days later in ICU, my memory was unfortunately very badly disrupted, I luckily remembered the remembered my name, my mom, and my son… But I didn’t have any memory of my daughter or much remaining memory of possibly 4yrs previous, no idea why my neuro was perplexed but I survived the very very in depth nature of what he did.
My AVM turned out to be around 10cm long twisting around my temporal lobe, 6cm long leading to my optic nerve each were not thin quite thick twisted very very unusually twisted in many directions… After 5 days in ICU I was moved to normal post op ward I was there for roughly 2 weeks then I got home.
I’m now 4yrs post op with a huge scar running 3/4 of the front and side of my head I’m missing part of my temple… with a large dip in my front hairline and left temple region, I had to have my jaw muscle repaired after surgery as areas were damaged, thankfully all of it is gone now, I healed well finally got my memory back and function in my right arm and hand, unfortunately I’m now permanently classed epileptic, I’m still in the process of finding the correct medication which can control them… I know this, all sounds low etc but I’m alive, I can walk, talk, do certain activities but my body is still 4yrs on easily exhausted but I am so happy I got the avms removed, I’m now 38 yrs old with a 18yr old son my girl is now 7 and I’m just so happy to live my life as a mum to my kids, I care for my own mum now to the best of my abilities. I now work freelance from home part time as a IT consultant /Web designer lots actually.
I’m so happy I found this site when I did, I would have posted earlier but I’ve found my anxiety and panic issues stopped me until now… I will be on more giving support and love to people who need it like I did… I just thank the gods and goddesses I’m still here and I’m still me… This site keeps me going now I read posts… But like I said only just overcome my mental health side to start being 100% able to support, help, give info and advice to anyone who needs it… So thanks to all for the support so many yrs ago. Love, hugs and positive vibes to all on AVM site.

Kitty xx

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Kitty,

Thank you for sharing an update. It’s great to hear from you and it’s really helpful to know about your experience. It’s this kind of sharing that helps other people in the more difficult times know that there is light at the end of the tunnel.

It’s also great that you look upon life so positively: it’s a model for all of us, that you count your blessings more than your limitations. That’s not always an easy thing to do, so again really encouraging.

I hope you do feel more able to chat with people here after a long time of finding it difficult. I don’t have experience of a brain bleed or the after effects of surgery that push some of us into the really difficult places that you and everyone else I’ve read from this morning have been in (it’s been a very humbling morning so far for me, I have to say). So it is really helpful to this community to have people with experience of the darker stuff to be able to share and encourage others still in the dark that there is light to be seen when the tunnel straightens out a bit.

Lovely to hear from you.

Richard

Thanks Kitty, it is great to hear from you. I echo what Richard said! The stores of strength, courage and perseverance like yours always amaze me and add so much to our community. Take Care, John.

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Thank you so much for reaching out. I can understand the emotional side of things following an AVM surgery as I went through the same struggles myself. Being a mom recovering from all of this takes time as the daily demands continue while we support our loved ones. I also found this site very helpful prior to and following my AVM and brain aneurysm surgeries. Please know that you are not alone. May this holiday season be one of good health & happiness. Carol xx

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