This waiting game suxs. I have a appointment on April 21st...to go over my angiogram result and what tx options are best for me. I'm so nervous yet anxious. I really don't know what to do when I hear these options. I was already told that my avm was at a location where they can remove it if i go that route.
This scares the crap out of me. Do I treat and have surgery or just let it be. I might be ahead of myself but reality is Im going to make some choices soon.
What at about my job?
What happens if I lose my vision?
What if im not the same person after surgery?
Recovery time can be longer then said...
I've told my parents and a few close friends about my avm and sometimes it feels so unreal.
I tend to block it off until I'm having a really bad headache or start to feel a little off.
I finally ordered a medical bracelet just in case something happens to me and cannot communicate.
I feel blessed in some ways...I'm ALIVE!!!!
I found out about my avm before a bleed and seizure but I also feel like a ticking bomb now that I know about it.
Its all fear and the unknown.
My friends and family that know about my avm have been great but can't fully understand how I feel .
Nayleen, I feel so much like we're in the same boat, I just found out at the end of March this year. Everything you said, I feel the same way!
I worry about my job, health insurance, vision, etc. Is yours in your occipital lobe?
It is wonderful to have found it before a bleed, but yes, I have been thinking to myself well what now...it could happen! BUT!!! It hasn't and that's what I keep reminding myself and at this moment everything is good. Try to stay in the present, right here and now. I myself have been thinking about a medical bracelet just in case. I think it's smart to be prepared, but try not to worry yourself so much...it is also bad for your health.
I am saying these things to you, to also remind myself because it's so easy to get caught up in the "what if" and the future that hasn't and might now happen in the terrible way we are imagining.
Keep your head up and I'll try to do the same. I don't know if you're religious, but I'll say some prayers for you that you find some peace and calm in your heart.
Please feel free to contact me directly, it helps me too to talk about and even though this whole thing sucks, it's nice to know someone else who is feeling the same way for the same reason.
Hi Nayleen. I have decided we should up your Ugh to a YUCK…BLECKKK or as the original Grinch show said STINK…STANK…STUNK. I hope this comments brings a smile to your face!
Thank you for reaching out to me...I'm blessed to have met you:)
We are in the same boat!! My avm is also located in the occipital lobe(left side) about 3cm.
I experience really bad headaches especially post angiogram which really sucks.
I have my good days.... boy does it feel great to feel "normal" lol
Monica, I hope that you have a great support system at home!! If not know that I am here whenever you want to chat :)
I'm mostly a private person so not alot of ppl know about my avm but I feel really comfortable with this group. Especially when I can talk to people who actually know what I'm going through.
I will also keep u in my prayers..We all need to find some peace within ourselves.
We can def get through this!!!
Please let me know how ur visit with the doctors go. I'm about to start to write down my own list of questions to ask:)
Your "UGH..." title brought a smile to my face. Been there. The one thing that will not change is tat no matter what happens, we are always here for you and understand all of this.
Life is always a gamble, just this one we gamble with our lives, who knows we are lucky :D. All the best… And live your life the fullest, that’s the sole principle I am/can hold on for now.
I know exactly how you feel. I just wanted to relate to you and you decide. This is my story.
I found out about my AVM a day after a brain hemorrage. Four places around my brain. We thought it was a bad migrane and took tylenol that night. Lucky me I heal good and the bleeding did not continue. Anyway, That was Feb 2009. Doctor was so cold and uncompassionately told my that my AVM is congenital and are triggered usually after 50 yr. old(I was then) or by a bump on the head. Embolization( I had 6 of them) is a temporary fix. Surgery is a must. Sure!!! I was told about the dangers but was also made aware that bleeding could happen again. He said " Up to you!!! " Cold huh??? He is a known specialist in LA, Ca. and his reputation and expertise is very known and so is his coldness. The feeling was there. I have 3 kids and a wife. I need to live for them. My wife, family and friends prayed for me. It helped. During surgery ( Right temporal lobe April 2009)doctors found more aneurism which could have possibly bled again. Under med Came back work to work Sept 2009. Nov. 2009 my rented car ran smack into an 18 wheeler. Survived that one too without any scratch. Someone up there liked me. My Neuro told me it was due to a seisure. Ever since I've been in and out of disabilities due to this mild seizures and finaly been convinced to go into permanent long term disability because of these seizures. Luckily I was covered by long term dissability with my old company and had a fixed income now. Wife still works and covers our Med insurance. Neuro Doc told me that I would have to take this anti-seizure med for life because of this spike with my EEG exam.
The damage after surgery was mild seizures and some light sensitivity at each half of my eyes.
I meant not to scare you but to help you decide. I know it is not easy to do and I hope for the best. Good luck to all of us.