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AVM Survivors Network

Hi. Interested to hear from anyone with Avm in right parietal lobe in eloquent area of brain


#41

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


#42

Oh no poor you, what did they say? X


#43

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 :smiley:

Thankyou so much for your kind wishes and saying a prayer for me, absolutely warms my heart :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 :smile:

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 :muscle:

Lots of love,

Corrine


#44

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


#45

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 :heart:

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 :open_hands: but until then definently not driving would be for the best and taking things easier in general for the next couple years :relieved:

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 :smile:

Loves of love,

Corrine


#46

Thank you Corrine you are such a lovely person.
What was the name of your surgeon? Also what is an EEG test? Gillx


#47

Aww Gill, thankyou so much, it really means so much you think that of me :heart: 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 :stuck_out_tongue:

The name of my wonderful, superhero of a Neuro-radiologist is Dr Prem Rangi :heart_eyes: 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


#48

Thank you Corrine. Xx


#49

Here’s a picture I took of me having an EEG.


#50

Hi John,
That’s a fab picture thank you! I’m sorry I laughed! :slight_smile: it couldn’t of been very nice but you have a great expression!! :slight_smile:
Gill


#51

A post was split to a new topic.


#52

Hi Panka
Sorry I’m unable to reply to your message.


#53

Gill,

Pankaj created two topics with the same text, so I deleted one. The other you can find here:

Richard


#54

Thanks Richard


#56

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.


#57

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