AVM thinker

Hi all, just wondering how all of you coped leading up to your operations?
All I can think about is my AVM, it is the first thing I think about when I wake up, I think about it all day and the last thing at night. Prof Morgan wanted to operate the week after I saw him and I said no because I wanted to make sure I had made arrangements for my son to be taken care of with school etc, I wanted to make sure that I had seen all my family and told them how much I love them and I wanted my mother to be here with me (she lives in NZ) so we made it a later date and now I so wish I had got it done straight away.
I think to much, my brain will not stop, what if it bleeds, what if I don’t come out of the surgery, what if I loose the use of my right side, what if, what if.
I can not seem to turn it off. It is driving me mad. I am trying to meditate etc but that is not even working. I am looking forward to hopefully feeling a lot better with less pain and heaps more energy in the months following the op. I have had a bad couple of weeks with headaches, blurry vision and so so tired all the time, but I must admit that I had a pain free day today, just tired, so today was pretty good. I just want to stop thinking about it all the time.
Did anyone else feel this way? I suppose it is normal to be so scared, and if your scared you think all the time.
Sorry just whinging. Thanks for listening, Take care all

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Whine away, you have good reasons!! I was in the hospital for the many days leading up to my surgery and so was drugged up but still it (and all the possibilities) consumed my every thought. It’s our own mortality and that’s not something you can shrug off very easily! Keep meditating, light a candle and focus on the flame, maybe that will drown out some of the worries for a few moments!!!

It is a huge ordeal. I cannot imagine how I could of gone through everyday life knowing I would be getting a brain operation in the coming months! It's one thing I have always been grateful for. I had a bleed followed by my major operation all in 5 weeks and I don't even remember half of it.

Even after 4 years nearly, it still astounds me. A brain operation is one of those things you'd never expect to go through in a million years.

Mine was pretty tricky and caused a lot of stress over the years. My AVM was diagnosed 4 years prior to my surgery. I was originally told that it seemed to be on the mend and that surgery would not be necessary, but the neurosurgeon had me do monthly CT scans for a year just to make sure. At the end of the year, he said "Go live your life," and said I should be fine. Two and a half years later, it started causing more trouble. So, six months later, after more MRIs, two more angiograms and meetings with three different neurosurgeons, it was finally decided that I would have a craniotomy. Of course it was on my mind all the time, especially since my wife and I had already made plans for out wedding (we had already been engaged for over 3 years). When I told the surgeon about the wedding plans, he said to go ahead with the wedding and scheduled the surgery for 5 weeks after. It was a VERY emotional wedding, not just for the sake of being a wedding, but also due to the fact that I knew there was a possibility that my wife would be a widow just 5 weeks after getting married.

Fortunately, the surgery was successful. It took a long 9 months of recovery following the surgery, but I was lucky enough to have a wife that was willing to stick with me through everything.

I definately feel for you! It is not easy to have AVM on the mind all the time, especially when no one seems to understand. Feel free to whine! We are here for you.

hi donna what youre feeling is a normal is constant fear strees and the unknown future which is complety normal way to feel i had to live with this fear for to long my biggest way of ataying calm was music but you sant listen 247, i was due for surgey in my gown ready to go to surgey ,the sanceled me as they hed no icu bed ready,so i waited three more weeks for the surgey.and as it turned out i ended up in icu with complications,donna its only normal to be shit scared i took a sleeping tab nearly every night for that 3 weeks before that surgey,its only normal to shit scared my thoughts are with you shane crotty

I had my craniotomy 5 weeks ago and I know exactly how you feel. Especially as a mom. I just prayed alot and had alot of people praying for me. That is the only thing that brought me peace. It is scary, but you just have to trust God and know that he will take care of you.

Thanks all for you replies,