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AVM Survivors Network

Hello all -my story


#1

Hello, I’m a 32yr old woman living outside of Preston in Lancashire and I discovered I had a cerebral AVM on 27th July this year when it ruptured without warning and I was rushed to A&E. An angiogram showed a large bleed in my temporal lobe (TPJ). I have had two embolisations and a craniotomy, and spent a week in a medical coma. Less than 4 months later I’m back home with my 2 young children and and attacking physio . The bleed caused a hemorraghic stroke and paralysed my left side so I have not walked since July. Feel free to ask any questions


#2

Welcome, it is great that you’re here with us. You’ll find lots of folks here with a variety of experience, and amazing stories of perseverance and courage. I think one thing that is consistent in recovery is time, its a slow process and I always tell myself forward is forward. I am 2 1/2 year post bleed for a left temporal AVM, 2 years since gamma knife. I have two children as well, mine are a little older, 13 and soon to be 15, I think this whole recovery process has helped me learn patience. This comes in handy with two teenagers! We sure appreciate the offer to ask any questions and we extend the same to you! Take Care and again Welcome! John.


#3

Hi @Kaygrace, I am only 45 minutes from Preston. I am so sorry to read your story. Most of the stories I have read so far begin with a rupture which is very worrying. I am 26 and have been having migraines and headaches every day for the last 2 years so my gp sent for a brain mri and this is when they found my avm on my occipital lobe. I have my first appointment with the neurosurgery team in 2 days… I am just so so worried! There doesn’t seem to be any help or information anywhere. I too have a young son, he is 8. I hope you make a full and speedy recovery! All my well wishes xx


#5

@JD12 Thanks John. Recovery is a funny old road indeed. How are you doing now? K


#6

@CharlotteLouise2992 Thanks girl. Sorry to hear of your disgnosis, must be very daunting for you.I believe knowledge is power so I would encourage you to do a lot of research in preparation for meeting your neuro consultant,only they can best inform you about your specific AVM. Feel free to message me any time, my eldest is 8 and I live directly between Preston & Blackpool, near Ribby Hall Village


#7

@Kaygrace, I definitely feel very lucky to have found my avm before a rupture. My doctor did tell me that most people only find out once they have a bleed which is scary! I have tried looking for more information on avms but there isn’t much out there. This website has been the best for me for reading other people’s experiences. I have my appointment today so I am praying that it’s quite a simple avm to treat (if that is possible). Thank you very much, it means a lot to have somebody to talk to who understands what an avm actually is! I’m hoping to be a lucky one that has found their avm and treated it before any damage! Ooh yes, I know Ribby hall. I am over in bury just outside of Manchester


#8

Although mine was a parietal bleed (twice in a year) and then my hemorrhagic stroke) I ended up being a left hemiparetic (left sided weakness) my last bleed occurred on August 17, 2017 and it took me 14 months to walk again without any assistive devices but I pray that you will get there soon one day :heart: My left arm/hand are still useless except for my balance being back thanks to botox but first I went through lots of baclofen. This recovery process is something else! I like to think of it as anything is progress and it’s day by day but eventually you see results. I’m a bit impatient but I hope to regain as much as possible back since I was promised at least 95% recovery back. I eat strictly organic and do as much therapy as I can and even learned all the exercises to do at home and try not to take a break unless I need it. We’re all in this together so cheer up! :slight_smile:


#9

Silly me, I forgot to mention my avm was treated through embolization and craniotomy after my second bleed + hemorrhagic stroke. Day day but recovery comes lurking slowly! Before you know it you’re far more progressed than from where you started!


#10

@Teiry Welldone on your recovery so far.

My hemorraghic stroke was actually where the temporal lobe meets the parietal lobe (TPJ) and I too have left side hemiparesis. I’m still learning to walk via neuro physio therapy. I can stand now (unaided) and my balance is improving daily. Recovery is certainly a funny old process.


#11

Well done you! Keep it up!


#12

I’m so happy for you! If you can stand, you’ll take your first few steps in no time!! Balance is still a big thing for me but I hope one day I don’t have to contrate so much on being balanced and having both feet on the floor :crossed_fingers:t3: And that one day it will be second nature like before.


#13

The neuro physio therapy I’ve been having is wonderful. I was such a floppy mess but now I have stability and can stand unaided for 2 minutes. It’s so good to have 2 feet flat on the floor. Wishing you continued success.