I am about 2 months away from having surgery to remove my AVM. it’s a decent size of 3 cm, and in the occipital lobe. I have had surgeries before, but this is a lot worse. We were lucky and it was found completely by accident. SO I feel like getting it removed before it ruptures would be such a blessing. But I am terrified of losing my sight. I am a digital artist, as well as a dancer, and well, I just can’t imagine a world that I can no longer see. I am desperately looking for something or someone that can help me ease this fear. Maybe even someone that had one removed form a similar area. I hope I find my help.
I meet my neurosurgon in less then a week, and will be scheduling the srugery then.
Hi Lyssa,
Did your surgeon explain the risks of the surgery to you and how it will affect you?? You should be as well informed as you can be and f get several opinions. The most important thing is that you trust your surgeon. It is normal to be scared and anxious before surgery, but a qualified surgeon should put you at ease.
Re: your fears about losing your sight. You would be surprised what you can do with limitations. You learn to adapt because you have to. We’re survivors! Besides, after surgery, you’d most likely get OT and help you readjust and adapt with whatever limitations you many face. It is definately better to get rid of the AVM before it ruptures. Take it from me - I had 2 bleeds and it hurts! Good luck and happy researching!
Hey Lyssa. Totally get your fear. I know we are all very glad for the medical miracles that get preformed all the time. And we know that these treatments are the best course of action for our AVM’s. But it still can be hard to face the “what if’s” and to wonder how life will change. I get it 100%. We have to own those feelings, and know they are somewhat irrational because they don’t help change the outcome. But they are very real and very understandable. The best advice I can give us to somehow just keep telling yourself that you are trying for the best possible outcome. That hopefully none of that will happen. And on the very very slight chance that it does, well you couldn’t have changed it really and you WILL learn to go on with your new life reality. There really is no way to ease the fear other than to accept it and to accept the outcome. And I say this as I’m currently freaked out about my upcoming surgery and the possibility of losing my ability to smile which is really my trademark! I don’t have any great advice for you really, but wanted to let you know I understand your fear and I hope that none of that becomes your reality!
Also- do go search the member tab with “occipital” to find other members who have had it in the same area. I bet you will find some comfort in reading their stories and experiences and being able to communicate with them directly!
Good luck with your appt next week.
Shalon