I’ve found myself visiting this site a lot, reading through peoples stories and looking for similarities or help I guess. I had Gamma Knife treatment May 2017 on the AVM in my left temporal lobe. From when it was found to the treatment it felt like my life revolved around hospitals, tests, scans and this thing I had never even heard of before. I started holding back on how I was feeling, my fears, my thoughts about all this because I feel bad for the people around me. I didn’t want to push what was going on with me onto them. Even though I know it was a silly thought but I couldn’t push away the worry that they’d get sick of it all, I certainly am
I’ve always had extreme migraines because of it, but now I just feel off, like I’m not 100% me, I often just feel down. My memory is like a fog that I can only reach into and hope to piece together things, when I look back or remember things it’s like a vague idea covered in haze. I struggle with words and sentences quite a bit and get extremely frustrated with myself over it, feeling dumb. This last week I’ve had these episodes where I feel nauseous and anxious out of nowhere and then seem to forget words, feel confused and dazed. Three times this week I was reading and suddenly didn’t recognize words or letters, I tried sounding them out but it was like a child trying to learn to read. It seems to pass and I feel normal again, but I can feel it lurking in the background, knowing it will come back. I’m insecure having conversations because I don’t want to sound dumb, I know people around me won’t judge but I also don’t think they understand what’s going on, because throughout all this I’ve looked normal, I physically haven’t changed, so I think it’s easy to forget that at times it’s pure chaos inside.
I don’t know how to explain any of it, or what I’m going through so I’ve always presented myself in a way so no one would look at me differently. But that’s just made it feel even harder to then talk to those people when I need too, when I’m looking for help to figure out what’s going on myself. It’s the first time I’ve ever written anything here, even though i’ve visited this site regularly for the last year and a half, guess it’s a bit intimidating at first.
Welcome to the site Sara, it is great you’re here with us. Amazing people here with a very wide range of experiences from patients, care givers, family and friends. Trust me when I tell you that you are among friends here. You and I have a fair bit in common. I have an AVM in my left temporal, it bleed in May of 2016, and I had Gamma knife in November 2016. I’ve had some similar effects with the memory and trouble finding words, aphasia.
It was very bad shortly after the bleed and slowly improved, but I did have a little regression about 6 to 8 months out from gamma. I think it is common that there is some swelling as the gamma starts working and in some cases people do a course of steroids. In my case this little regression again slowly improved.
I think the most difficult part for me was knowing that it was completely as a result of the AVM, while I knew what I was wanting to say I couldn’t find the words at the time. I’m harder on myself than others were for sure, specially those who know and care. Patience is so important, and I look at where I am today compared to a year ago, I look forward to the little steps. Take Care, John.
I really appreciate your welcoming response, it’s comforting to hear that someone was in a similar position, and that it improved, definitely makes me feel more hopeful that it will pass for me too. I have yet to have a follow up appointment since the Gamma Knife so I don’t know if there is swelling or what may be going on in there.
I try to remind myself that these symptoms are all because of the AVM, that there’s a reason for it. But it’s very easy to forget because never really know whats going on in the brain, feels a lot less understood and since it’s not something you can physically see yourself, it’s easy to feel frustrated with yourself instead. Little steps is a really nice way of looking at it, going to try to remind myself to have some more patience!
It’s great to hear from you and have you tell us how you are.
My thoughts are that getting better never goes in a straight line, so we should not be put off our stride by some regressions. And I would definitely find at least one or two people you can share how you are feeling with. It is a very polite thing to be a bit reserved and not blurt out everything about life to everyone you meet but it is also much better for the mind to be able to share with one or two.
Welcome to the group! This is the place to come when you are feeling down, confused, and alone. Trust me, we have all been where you are at one time or another. This disease is really confusing in the beginning. And, it will likely be just as confusing as you move along in your AVM journey. All of the things you describe you are going through, know that I felt the exact same way! My AVM ruptured in Nov, 2014. I have some AVM years under my belt, but there are still times when I get pissed off and depressed and sad and misunderstood and can’t find the right words when I want them. I’m off-balance or dizzy or my memory goes on a break leaving me to ponder the simplest things at times, but in spite of it all, I’m still here to fight this wicked monster. We have to fight to improve everything in our lives. We have to accept who we are now, and not dwell too hard on the person we used to be. True friends will come to understand who you are now. Your family loves you just as much as they always did. Let us, your AVM family know when you need support or encouragement. We will be there for you because “we get it” when others don’t. Try my recipe: P&P (Prayer & Patience). Wishing you the best.
Thank you both for your kind supportive words! It feels like a weight has been lifted being able to come here and talk to people that understand without much explanation needed.
It often feels like a cloud hovering over my life, and wishing that it was not something I’d have to think about. I have a trip planned at the end of April (something I’ve wanted to do for so many years but was never able), to travel around Thailand, Vietnam and then plan to go to New Zealand where we have a working/holiday visa for up to a year. Me and my boyfriend have been looking forward to this trip for so long but I have lately felt a bit defeated, I’m going to have my 1 year follow up scan before I go, and I’m scared they’ll find something that will mean I’ll have to stay, and open the doors to more hospital visits/tests/procedures. I remembered something my doctor said a year back which was ‘you should go about your life as normal, do all the things you want too, this doesn’t need to affect your life’ But that doesn’t feel entirely true. My AVM’s existence will be in the back of my mind, what if something happens while I’m away? What if it means something comes up and I can’t even go…
Trying to be more positive that everything is going as planned, that I’ll have the scan and it’ll be good results. That the symptoms I’ve been having are just due to the radiation process and it’ll all work out.
The thing with gamma knife is that it all takes so long. There’s no way you can sit and wait for life for that long, and it is good for the mind or the spirit to just re-engage with life. It’ll do you good.
The one thing to be sure of is that you have travel insurance that will cover you if you were to take a turn for the worse. Plus, my insurance requires that I get permission from the doctor to travel. Check what the specifics are and you should be able to relax into it properly.
Sara, great advice from Richard. Make sure the insurance is in place! We do have to get on with things as best as possible given the long time frames we are subject to. I struggled with getting on with things initially but now just have at it. I’m fortunate that I can work through all of my new normals. I went to Hawaii last January, two months after gamma and had a bunch of insurance. It was planned prior to my bleed and I hummed and hawed as I did’t want to put my family in a difficult spot while there although I knew I would get taken care of. Found a Canadian company TUGO that only considered a one week time frame for pre-existing and was easily covered. My whole family went to Cuba two months after that and met a bunch of relatives including my 80 year old mother, same coverage. I wouldn’t trade these trips for anything and created great memories with my immediate and extended family.We now are booked for Hawaii next Christmas.
I don’t want to seem aloof, I dd check with my doctor and was well insured but sort of adopted YOLO, You Only Live Once. Within reason of course! Its making the time pass faster, and the need to stay working! John
Thank you guys! It’s reassuring to hear about your travels and that it hasn’t hindered you, I will speak to the doctor about getting an all good to travel, which will probably immediately put my worries to rest.
I took your previous advice and opened up more to my sister and she was extremely supportive, and just talking things over made me feel less stressed about it all. I was afraid she’d get anxious and worry herself but pushed myself and was completely surprised by her reassurance.
This forum has been an absolute life saver, with all the support and hearing about everyone’s experiences, it’s really helped put all my unnecessary stressing to rest.
In regards to your travel insurance, I thought (or came across a bunch of companies) that don’t cover pre-existing conditions. And you don’t hear much about AVM’s or when you’re post treatment for AVM’s so I thought it’d be hard to find an insurance company that would cover me for anything related to my AVM. I’m going to have a look at TUGO or if there’s anything from here that is similar!
I agree getting insurance to travel can be a nightmare but you want to get yourself covered, or at least go into it knowingly. It is not getting appropriate cover that is suppressing me from going abroad at the moment until I can tick all the boxes on my insurance.
In that you’ve had treatment for your AVM might make it all OK. It would be an untreated condition that might be more of an issue. But a lot depends on the small print.