Quantcast

AVM Survivors Network

UPDATE: I seen the neurosurgeon,

"If you take a look at my face you see my smile is out of place. You can track the tears down my face”

I could had this AVM and not never knew it. I was told about people sometime live their lifetimes without having any symptoms, ( so the seizure was an uninvited blessing) Because the blood vessels could of broke open and bleed…whether I knew it was there or not. I learn that I couldn’t ignored this.

Because there is no way of me telling whether it will bleed at some point in my life. The brain is probably the worst place for me to have this. (Mentally) Im not ready.

The doctor was great and giving me a clear view about whats ahead of me. He started me with a seizure med. ( Keppra) And more test to come. I have to stop smoking so thats my day. But I got hope also that…I am capable of living a normal life!

2 Likes

Welcome to the site I know it’s unfortunate news but I’m glad they caught it before it ruptured I didn’t find out about mine until after ruptured and it caused plenty of damage; stay positive and attack this day by day step by step!

Hi, Pattirobison here.
I am older and discovered the AVM quite by accident. I had twitches in my arm and foot
(seizures they say…) I was shocked because this had been going on for several years and I brushed it off. I have a hard time accepting this as a seizure since it became an issue of driving etc. Never had the Twitching cause me to black out or not be able to drive. I too started Keppra but could not stand the side effects so I am off now but watch my blood pressure and try to maintain 120 or below.
Take care and treat yourself with kindness.I chose no treatment and my AVM is large but radiation has a 7 year rate of shrinkage and I am already 75!
Pray for each other! Blessings

1 Like

They gave me seizure med( Keppra) and then told me to stop smoking, they gave me Chantix. I can’t drive, Because I had a seizure. So I can’t work just right now. So much time waiting and thinking and googles!
Thank you, Im still a work in progress but thank god I got options with this AVM.
“I used to ask God to help me. Then I asked, if I might help him. I ended up by asking him to do his working through me.”
Stay prayed up!

2 Likes

Hey Blackcotton,
“…(Mentally) Im not ready.” Show me someone who is ready. Having a neurological diagnosis is shocking for anybody. None of this is easy and anybody who tells you otherwise has never been in this position themselves.

I would like to add a word of caution in regard to Chamtix (in Australia it’s marketed as Champix, but it’s the same stuff). For some individuals it can work well, but for some people it can have a very depressive effect. I have known of a few who have had such a reaction on this medication. One dr’s professed that this was a normal effect of quitting cigarettes, it was not the lack of nicotine. It was the Champix. Once they stopped using it things returned to normal. So please be aware and consult your Dr if you have any adverse effects.

Merl from the Moderator Support Team

3 Likes

There are other ways to quit smoking. Patches work for some, lozenges for others. Please tell your doctor if you have any side effects with the Chantix. Good luck on your journey and stay strong.

2 Likes