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 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.