Hey guys I was just diagnosed about today actually...and i guess im just scared, I havent had to deal with any family memebers getting any thing serious, so im new to all of this. I was just wondering what people do to help them relax and keep some sort of sanity.
Welcome to the site Christopher!
Being scared out of your mind is a normal feeling when you first hear of some previously to you unknown condition: AVM.
Most of us here or our family member has or had an AVM. Lots of info to shift through and understand. As you learn more from your DR, you can search on some of those terms here to read what others have posted about it.
Keep a notebook for all your questions as well as a journal of all your tests and results, including where you did what, who the DR was, what meds you are on, when you started, the dosages, etc. Down the road it will come in handy so you can remember accurately.
Welcome to the group Chris. This site is a wealth of information and support. Have you seen any doctors yet? Have they offered any treatment options? The great thing about this site is that there is someone that has been through each and every treatment available and can tell you what to expect. The best piece of advice I can offer is to find a doctor who specializes in AVM treatment. We're a rare breed and you want someone who knows about this condition.
Wow Chris well I hope you can get some help and I hope yours is small. I wish you nothing but the best with your AVM. I remember the feeling, but I never let it get to me. Until I had surgery. I hope and wish you the best of luck. c:
Thanks a journal is a great idea. And I have found a specialist in Vancouver… Unfortunately it’s inbetween my two brain hemisphere on the left so surgery is looking like not an option
Welcome Christopher. Who said I’m sane? Ha ha. Actually, keeping a sense of humor is invaluable. Accupuncture, prayer, yoga, meditation, and this website have been instrumental in helping me.
Stay positive Christopher, there is so much hope and technology has come so far. My daughter's diagnosis was the first medical issue ever in our entire family. It was the first time I "couldn't fix something" myself!!!!
I agree with Ron's advice with journal and notebook. I started both for my daughter and it continues to be an valuable tool. I bring both to all dr. visits. Also request all test reports and scans to be sent to you or wait for them before you leave facility. You may need them to compare over the months ahead and it is a time saver to have them all in your notebook
I kept 3 sections: Medical/Insurance/School. Write all your questions down and jot down names of everyone you speak to. Stay organized and stay positive.
Surround yourself with a good support team and keep the faith that you will overcome this.
Christopher, many of us are now AVM Free...It's a journy, but you can do it! Stay Strong and Stay Positive!
Hey Christopher :) The first part of your hurdle is getting diagnosed and thankfully they have found it...I saw doctors for 4 years of me complaining of headaches and confusion and all the docs told me was I was depressed...yah think...lol. I was never so happy and scared out of my wits when a doctor cared enough to find out I had an AVM...finally I could put a name to what I was dealing with. Mine was in the left parietal lobe and was strangling a major artery...causing focal seizures, massive headaches (people thought I was just addicted to tylenol ) I know this is terribly frightening but you can and will get through this. Once I knew what was causing the problems I was having I could laugh at some of the things...for instance I worked in the finance industry and found times when the seizure would make me talk like I was drunk... yup, made my work interesting! I was diagnosed in I believe February of last year and had the brain surgery in April..The best thing you can do is definitely journal everything that is happening to you...I found this really helped when I had to see the neurosurgeon as I just handed him the list of everything I was going through...also, bring someone with you to your appointments...I found this really helpful as my AVM symptoms worsened I had a hard time remembering everything that was said at my appointments. It is also good to have the emotional support. My surgery was in Edmonton, Alberta... but I am now living in Qualicum Beach, BC. Take care and keep your spirits up...try to laugh whenever you can...believe me it helps! Take Care :)
Welcome Chris!!! It is just so very normal to have this fear when first diagnosed yet please know that there is so much support here for you!!! This site was a lifeline for me thru my AVM journey that started 18 months ago and recieved my AVM-FREE report back in early May - thank God for that! I'm sure that you're under the care of a Neurosurgeon and please put your trust in your medical team and know that that there have been so many medical advancements with treating AVMs and reading thru the success stories on this site gave me so much hope while I was on my journey. Don't be shy to reach out for support whenever needed; that is what we are all here for =)))!
Positivity is almost a must. Everyone has their days where it gets to be overwhelming, that's completely normal. I wish I could give you advice on sanity lol, but I don't have much left myself! I am pregnant with my third child and have a toddler to chase around so what sanity I would have is LONG gone! For ME (and it's just me, not everyone deals the same) I like finding out as MUCH about my condition as I can. Learn the terms and what all the treatments are and how they're done. It keeps the nerves down for me so I know what to expect (my AVM is in my brain and as with all AVM's can be a bit precarious). There's SO much information and support on this site it's unreal! You've made a good choice by coming here :D Welcome to the site and if you ever need to talk feel free to let me know! I've been dealing with my AVM for about 3 years now, though I've been lucky and nothing serious has happened just yet. Best wishes and keep your head up!
I was diagnosed in April 2011. When my GP saw the MRI report, I think he sort of freaked--called my husband, said to head straight to the lab to pick up a copy of the scans & then head straight to the e.r. where my neurologist was--but I didn't have a neurologist. I wasn't to do anything to jar my head. I fully expected to have brain surgery that night, but I wasn't even seen by a neurologist that night. I was sent home because I didn't show any signs of an active bleed.
I spent the next day googling all the info I could about AVMs, my husband popped the disc with my MRI scans in the computer & looked at them, and my GP started researching neurosurgeons.
I was coming off a several day migraine, so I knew that if I got myself all worked up & stressed out, then my head was going to start hurting again. So, as a reading teacher, I did what I do best, and kept reading whatever I could find. I made jokes, and laughed when others did, too. One of the attendance clerks sang, "If I only had a brain..." when I went in to give them an update on me. And I kept going in to school & teaching my classes (except for my appt to meet my neurosurgeon, my appt. for the angiogram, and the appt. with the neurosurgeon to start planning treatment). I just tried to keep doing my job as best I could because it kept my mind off everything else. My mom had come to stay with us & she did the worrying (and cleaned my kitchen for me every day!)
I was aware of the worst that could happen, but tried to remain upbeat & positive. Also, my fellow teachers and the administration at school were very supportive. I spent a lot of time on facebook keeping up with friends & family all over the world & their thoughts, prayers, and wishes helped keep my spirits up. I was even getting well wishes & prayers from friends of friends of my friends & family members.
And I took inspiration from my internet buddy Kitty C. We have "known" each other for years. We met on a website/message board for an author. Kitty was overseas working on her master's degree in translations & was diagnosed with kidney cancer. It had spread to her brain. She has undergone at least 2 craniotomies, over 10 hours of Gamma Knife radiation, and chemotherapy. She knows the brain tumors will eventually kill her. Yet, she has remained positive & has found humor in her experiences & shared with us in her blogs. I decided that if Kitty can do it, then I, who has a MUCH better chance of treatment & survival, can do it.