Matty, I have to have the micro surgery for the AVM and I have no idea how long I will be in surgery how long I will be in the hospital nor if I have to have a lot of aftercare does anybody have any answers for this? Yes I’m hoping this Tuesday that my I get straightened out. Many blessings to you. And yes 20 to 25 years ago but they did not know enough about it and until they did another MRI I had no idea it was bleeding but I was having seizures passing out having headaches so I guess I was pretty lucky to find out how bad it was.
Hope the eye gets sorted. … they will sort it MNI they work wonders these days…Be thinking about you next week.
Yeah, good luck on Tuesday, Tammy.
Thank you so much Matty and DickD, it is just making me crazy one Eye can’t see far away do you have the Eye I can’t see close and it makes for a frustrating day blessings to you both thank you very much for your positive words…
My AVM is 2.1cm x 1.2cm deep in my brain. There is 100% risk of complication. I have had continual vision problems over the last 5 or 6 years. My vision changes constantly, sometimes very blurry. Had it checked and the docs see no reason to be alarmed, but to not hesitate to march into the ER if I feel the need. Its very frustrating. Affects the ability to read and drive. Headaches never go away. Have had severe headache daily from the minute I wake, to the time I go to sleep, since 1998. I’ve been on Morphine daily for about 4 or 5 years. Also have glossopharyngeal Neuralgia which causes severe nerve pain to (usually left side) Jaw, ear (inside and out), throat, tongue, teeth, upper pallet, and neck. Fun stuff!!! On Pregabalin for the nerve pain.
I’ve got like floaters but nothing else in my eye. Optician thought I had macular degeneration starting last year but hospital said “no”. So, I’ve got a little something going on but not sure whether just floaters or something more sinister.
I just want to take my hat off to you. You’ve got a big deal, you’re dealing with it the best you can and that deserves recognition.
Very best wishes,
Wow ed i don’t know what to say to that… i wish i had some words to help. i sometimes think i have it bad, but there is always someone worse off than me.
so is there any chance of an operation for you.
Thanks guys. Very much appreciated.
There used to be a lot of anxiety that went along with the non stop pain, not knowing what was going on at first, the inability to focus, vision issues, and side effects from the drugs, etc… I didn’t want to accept what was wrong, and just want to be normal. Lots of stuff spinning around in thoughts. Panic, realizing you can’t do many things anymore, the effects on social life, feeling like it was impossible to be able to keep a job, how would I survive financially if I couldn’t work anymore, etc… , while in constant intense pain. When I finally did accept it, the anxiety went away. Like a huge weight lifting and going away. I’m in a better place since. I has to realize this is my new normal.
I hope that sharing this helps someone who is just starting this journey. It can be pretty scary at first going down this road, not knowing whats going on at first and what to make of it all.
I also realize my issues aren’t as bad as others have it, and thanks to Bens friends network (AVM Survivors and GPN/Living with Facial Pain), I know I’m not alone. When the pain is over the top, yes, I’m thinking about me, but I try not to. I’ve seen images of others with the post-op scars on the skull. Stripped down, It is what it is. I know that the love of family, friends, and coworkers, etc is more important and precious than anything else. Nothing else matters. I’m on a constant daily roller coaster of not doing so well, to doing better (up and down). It is what it is, it’s a nightmare, but theres not much I can do except take care of myself, take it easy, and appreciate everything. Thanks again guys. Your kind words are appreciated.
It’s great to have you with us. You’re absolutely right about the effects of anxiety. Shedding that is a big step to feeling better. I could learn a lot from you: you’ve got lots to give.
Keep up the great outlook. Seriously.
I got through my embolisation … now recovering. Hope you got your eye sorted on Tuesday. I guess it could be quite a long time to recover but want to say still thinking of you. Good luck!
wow Richard how you doing, any pain… did it take a long time to do the operation… hope you’re on your feet soon.
Yes the eye is still not fixed, grrrrrr
how you doing, not seen a post of you in a while.
Matty, sorry I have been emotional, not feeling it…I will be back soon…thank you for asking…