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AVM Survivors Network

Hello I'm Carl

Hi. my name is Carl …a landlord of a pub in Staffordshire…I had a seziure Dec 2017 in my car on a Mcdonalds car park (if it had happenened a minute later i would have being driving home),i came round to the police askin me how much i had to drink & can i blow in the bag,The result was zero…so they eventualy called an ambulance…arrived at A&E not knowing what had just happened to me… went thru all the tests CT MRA scans, ecg, heart moniters,epilepsy meds …Sorry i ramberling lol…was diagnosed in april 2019 with a right frontal lode AVM tht had bled after having an celebral anigogram. (wich may i add for the benefit of members who may ave not had one dont be apprehesive, there fine) The best option to me is surgery the AVM is 1cm< & near the surface …i have no symptoms, headaches etc at all tht affect my life,but there is allways risk of another bleed …its a pleasure to meet you all… any advice would be most welcome… CHEERS,Carl

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Welcome Carl! Great to hear that you have no symptoms and that there is a good treatment option! I had a bleed back in May of 2016 and gamma knife in November 2016. Tough decision to follow up with treatment given the know symptoms, for me I had options and chose the least risky. Great you’re here! Take Care, John.

Welcome to the site!
my AVM was near the surface but I didn’t find out until after it bled when I did have it removed it was a fairly straightforward craniotomy and they got it all.
personally I would have the surgery to remove it and not wait and see if it might bleed in the future while you’re waiting for the embolisation or gamma knife to be effective in removing it.
Just my two cents worth everybody’s situation is a little different so you have to make the best decision based on the facts that the doctor gives you good luck!

thankyou for your welcome…its a relief to be able to talk to people with what seems to be a rare condition …and help me make a desicion …Ive found you can talk to your friends & family all day long …but they dont know what to do either …at the end of the day its going to be my decision…and i think i am in the right place & people to make it Yours thankfully Carl

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Hi Mike, thankyou for your comment …im on the list for surgery & am considering it…May i ask you what the recovery period was like & how long for yourself… i appreciate were all different , but would give a guideline …your 2 cents worth is worth dollars’s to me Thankyou Carl

the craniotomy to remove my avm I was out of the hospital in 4 days. I had to stay at home and recover there for a week before I could continue my rehab from the first bleed. Obviously it’s not a small surgery and I slept a lot probably for two weeks after but at least I was at home.

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Cheers mike, I had a call today from Queen Elizebeth Hospital, …giving me date of 24th sept 19 …After i had my bleed in dec 2017 i didnt need any rehab at all…just carried on as normal…i get the impression tht you were going thru rehab after your bleed, before you had the crainiotomy… if so…I am now thinkin toward, it would be agood idea to go ahead with the operation. to aviod any further problems I have to comfirm tomorrow … Cheers Carl

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Cheers John its great to be here …after turning down an offer of invasive surgery. on 13th Aug 19… due to acute apprehension…ive been offered a date in Sept 19 …after being here, even this short time. I feel less apprehensive about the decision Thanks Carl

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We’re with you Carl! Great that it is not going to be a long waiting game. Take Care, John.

Ceers John, much appreciated

Hi how did you recover from your craniotomy? I have to have a planned one,at the back of head ,what was recovery like? And the pain ,dreading it xx

Carl, how are you doing with your date coming up? We’re rooting for you!

Lean on us (and keep pulling those pints). :beers::beers::beers::beers::beers:

Seenie

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to be honest once I was released from the hospital I never used anything stronger than extra strength tylenol…never used the percocet they gave me; I had a sharp pain at the incision site for a few days but nothing excruciating.

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Hi I had the operation for my AVM (spieter martin grade 1) in th right frontal lobe on the 24 sept at th QE. Bham UK. think it took bout 4 hrs . after the recovery room went to critical care for observation NO pain just a feeling of throbbin at the scar area … 2 paracetamol every 4 hours for 2 days in hospital. did the trick…i was discharged home on 26 sept…I know how lucky i am compared to some suffers here… I hope this helps somebody …as a positive result of surgery Carl

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Carl, great to hear from you! Hey, it’s only three days after your surgery and you are already here in Survivorland. Well done, you!

I hope this helps somebody …

This does help somebody: it helps all of us, whether we’re doing well or not. I’m fine today, Carl, and I’m doing well. But hearing from you makes my day even better: you remembered that I’d be wondering. And I like thinking that things went well for you. Even if your experience was less than ideal, I’d be happy to hear about it, because I like to think that people, even strangers, know that I care.

Just by being here, you have helped me, and others too. Why not go to another thread or two and click on the heart? Post a short comment? Say hello? Spread the love. You’ll make someone else’s day, just like you made mine.

Seenie from ModSupport

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Carl,

Great to hear from you! Keep up the great work getting better! Remember, recovery is not a straight line, so don’t be surprised if some days feel like a setback.

Very best wishes,

Richard

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Hi Carl, I’m pretty new here and have only just seen your original post and the follow-ups, but I just wanted to say hi and that I’m so pleased it’s all gone well for you.

I know you’re early in your recovery but it sounds like things are good, are the doctors happy with the surgery do you know?

I had a craniotomy in March of this year. If you ever want to chat or even just vent about anything give me a shout :slight_smile:

Great to hear from you so soon Carl, and that things are going well. Take Care and take it easy! John.

hi Sarah, Thanku for your kind words, The consultant surgoen seemed pleased with outcome …just got to go for a CT angiogram in a couple of months to make sure is all gone… Hope your recovery goes well,and thanks for the offer, i know where you are if i need a chat & visa versa xx

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Thanku Richard , much appreciated, i wont take anything for granted …every day at a time …but thanks for the warning…it may help me in the future ,Carl