Hi Gill…
I too have been diagnosed with an AVM on my right frontal lobe. I had my angio last week and i am currently in my neurosurgens waiting room awaiting my results an a plan of action ahhh!! Xxxxx
Oh no poor you, what did they say? X
Hi there Gill,
Sorry for the very late response. I have an update post if you have the patience for quite a lengthly read! Here is a link: My left occipital embolisation story 
Thankyou so much for your kind wishes and saying a prayer for me, absolutely warms my heart 
I really do appreciate this whole community so much and you.
Gamma knife is a great option to be fair especially with the tendancy for a fast recovery time post surgery, many pros. Any ideas as to when you will have a date for your GK?
Meeting you in London would be amazing and ofcourse I would love to meet your kiddo, I love children! I plan as soon as I am recovered close to enough to travel out I dependently to organise another London meet up, giving notice ofcourse. Would be amazing if you were available to attend and I will make sure to ensure everything is lil one friendly ofcourse 
If you use facebook, I have created a page for the meetups: https://www.facebook.com/UKAVMmeetupevents/
Or if you dont have facebook not to worry, I will be promoting events on here as always and I am planning to create a website page soon too.
Best of luck with the Gamma Knife! One step closer to recovery 
Lots of love,
Corrine
Hi Corrine,
It’s great to hear from you, I’ve been thinking about you a lot. I’m so glad you’re OK.
I’m sad to hear what an awful time you have been through with the operation and losing some eyesight and beautiful hair. You are so brave.
Your story has made me cry. But your strength and positivity is amazing and an inspiration to us all. You have had a difficult young life and you are now about to get what you truely deserve, a fantastic life!!
I look forward to meeting you. Rest well and take care.
Ps my gamma knife is the beginning of May. I’m concerned about the 5% risk of developing seizures and epilepsy over the next few years and so have decided to give up driving and take things easy until it has gone.
Gill x
Awww Gill, it is so sweet that my story brought such emotion to you and has touched you in such a way. I am really glad you got positivity from it and that was my goal whilst being as open and honest as I could be. I won’t pretend that it hasnt been tough but I am very lucky to be alive and we have all gone through our fair share of challenges! What is beautiful here in this community is that we share them together, the highs and lows and support one another with love and compassion. Together we show the truest beauty in humanity and inspire one another every day
Oh you have absolutely made my day saying that, I am really looking forward to meeting you in person!
I am very impressed with your attitude. I am usually urging people to take it it easy but sounds like you have it all covered. On the positive if you did suffer from epilepsy, you could always take try differant anti-seizure medication until you find one that suits you in terms of little side effects 
but until then definently not driving would be for the best and taking things easier in general for the next couple years 
Please let me know when you get your exact date in may so I can put it in my calender and send floods of positive energy and wishes filled with love on through the day! And ofcourse know when to wish you a speedy recovery
Loves of love,
Corrine
Thank you Corrine you are such a lovely person.
What was the name of your surgeon? Also what is an EEG test? Gillx
Aww Gill, thankyou so much, it really means so much you think that of me 
trust me I still have my moody moments when I need a nap like the next person or I’m hungry. But we all have our weaknesses after all 
The name of my wonderful, superhero of a Neuro-radiologist is Dr Prem Rangi 
I couldnt recommend him more to be honest with you. He is so humble and kind too, he only introduced himself to us as Prem. Here he is: http://www.queensquaregammaknife.co.uk/our-team/consultant-neuro-radiologists/
A EEG scan I believe measures electrical activity going on in the brain to decide if it is normal or not. I am sure the following link will explain a lot better than I ever could:
Best of wishes,
Corrine x x x
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Thank you Corrine. Xx
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Hi John,
That’s a fab picture thank you! I’m sorry I laughed! 
it couldn’t of been very nice but you have a great expression!!
Gill
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A post was split to a new topic.
Hi Panka
Sorry I’m unable to reply to your message.
Gill,
Pankaj created two topics with the same text, so I deleted one. The other you can find here:
Richard
Thanks Richard
I had my AVM removed from Right parietal lobe in August. It was less than a cm from my motor cortex. I was left with residual left leg weakness but it is improving with therapy. I went with one of the best surgeons in the county and still ended with a traumatic hospital stay. After Embolization and then AVM resection I developed a hemorrhage 2 days post op and almost died. They operated again and had to remove part of my skull until the swelling of brain decreased. Then went back to OR for the third time for crainoplasty. This surgery is no joke. I survived but am feeling sad most days.
Hi Eck
That’s awful you poor thing what a terrifying experience. You must still be very traumatised by it all which will take time to get over so I’m not surprised you are feeling sad. Maybe you could ask your doctor for help, maybe anti depressants can help you through this. Everyones amazing on this site so please keep posting on how you’re feeling.
Gill
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Hi Gill
I hope you are well and don’t mind me messaging.
I was wondering how your Gamma Knife went?
I am due to receive Gamma Knife in April at The National Hospital for Neurology and Neurosurgery for a large Parietal Grade 4 AVM. I see you were treated there and also have a Parietal AVM.
I am also a mother to a 5 year old and am struggling greatly with the thought something will go wrong with my AVM before the treatment has time to work (4 years). I fear with my age (41) and everything my body has been through in recent years it’s only a matter of time. I am trying to remain positive but I am finding it hard.
Best wishes
Hi Gill
Thanks for responding to me, most appreciated.
I am so glad to hear your Gamma Knife treatment went well. I wish you good news when you go for your final Angiogram. I am sure you will be AVM free and what an amazing moment that will be. Please let me know.
I am very worried about the day. I have a mixture of irrational worries, what if they don’t hit the right spot! And more rational worries, will I have a painful headache etc. I guess I am also worried about long term side effects with my AVM being large. I am not really looking forward to another Angiogram, although my last one was ok. It’s good to hear you were happy with the team. My treatment is end of April.
At the moment I am finding it very difficult to stay calm and have a positive mindset. This is due to both physical and mental issues I am experiencing. I can’t help but feel my AVM has been pushed to its limits in recent years both physically and via stress/emotions.
I was pregnant with twins in 2020/21. I lost one twin in utero at 18 weeks and then my other little girl was born premature at 26 weeks. She was with us for a month in neonatal intensive care and then passed away. It has been and continues to be the most painful time for me, my family, my little girl. I tried to stay positive throughout this time but whenever I was something went wrong.
Then I went and threw myself into exercise to help my physical and mental health. I got a PT but it was HIT weight lifting based. The weights increasing every week and they were heavy. I told the PT every time my head was hurting, full of pressure, she told me it was normal to feel this. In the last session my head felt like it was going to explode and the one sided head pain remained for days. It felt like my head had been split down the middle. This is what took me to A&E and the AVM finding.
I guess I just feel with the pregnancy and everything else then the weights, which I did for 6 months! My AVM must be at breaking point. How is it going to hold out for another 4 years! I have read so many stories on here about pregnancy and lifting weight causing ruptures and I fear I can’t be far off one, also my age. I see you lifted weights too though.
If it wasn’t for these factors I would take the annual risk of non-rupture as good odds.
I have rambled here and over shared ( which isn’t like me) but I think I just needed to get some thoughts out. I guess this is just consuming me at the moment and I am angry too this wasn’t picked up before. I have been going to my GP since I was a teenager with right sided migraines and raised concerns about them getting worse with left sided body/face numbness/tingling in the last 5 years countless times.
I know anger is pointless as it’s only me it hurts.
As you advised I have and will continue doing everything in my power to take things easy. I also spend every minute I can with my little girl. She is my world and my number one priority in all this.
All I want is to be with my little girl as she grows and for her to be happy.
Take care and I wish you and your family the very best.
Please let me know the results from your final Angiogram.
Best wishes
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@Kel1 you tell really quite the story! You’ve been through an incredible amount and I understand your worries completely.
I think the thought I want to offer you is that I am often amazed by how resilient people are, how resilient our bodies are, and that while 4 years seems like an eternity at this point, it does go past quicker and quicker.
Like @gill1 says the end of April is getting closer, you’ll have it done soon and (in my mind) every day after that becomes a day of getting better rather than a day of getting worse.
It’s a very difficult situation to be in and there are going to be challenges along the way but you’re doing positive things about it, taking the right steps to get to a better place. I think you’re doing great.
Very best wishes,
Richard
Thanks for your response Gill, much appreciated.
I am taking it very easy, no lifting at all and trying to stay as calm as possible.
Thanks for your explanation of the process, hopefully I won’t be in the machine too long and won’t feel too bad afterwards. Also hope I will only need the one treatment. I have been advised I might need two (4 months apart) but will not find out until the day.
Once again I hope you get the good news you are AVM free soon. What an amazing feeling that will be.
Best wishes