New to the group, relatively healthy 43yr old, Canadian. After 3yrs of odd neurological symptoms, my doctor finally referred me for an MRI. She called me last week to inform me they found a small cranial AVM on my MRI, I ‘think’ she said it was (un)ruptured. Waiting to see the neurosurgeon (just so happens to be the Chief of Neurosurgery, AVM specialist ) for an Angiogram then to decide treatment. Hoping I’m a good candidate for craniectomy, I don’t have the nerves to just wait around hoping it doesn’t bleed. Since finding out I’ve been a bit of a basket case Kinda freaking out a little, wasn’t expecting that!
Hi @Phoenix and welcome! I’m sorry you’ve been diagnosed but so glad you found our group! I won’t cast ant aspersions to you and make you think life is rosy, but I am first off glad you found us. Second I’m glad it hasn’t ruptured. And third I’m glad you’re listening to your doctors and treatment team. Ultimately you hold the keys to anywhere they want to take your health but I’ll say this as a survivor of three cranial bleeds, a stroke, and a host of other procedures, stay on top of it! Check my profile for my story and my book if you’re so inclined because I literally filled up the pages with my four bleeds and other mishaps that I advise from one survivor to another on what NOT to do but again so glad you found us!
Hi Pheonix. Welcome and glad to hear they found it before rupture. I too am a recently (April of this year) diagnosed AVM patient from Canada (Vancouver area). I was having what had been diagnosed as panic attacks for 15 years before it was discovered that these were actually focal seizures. What sort of odd symptoms were you experiencing if you dont mind me asking.
Ah a fellow Canadian, I’m on the east coast, New Brunswick. Oh my gosh, panic attacks?! Likewise, I’m happy for you that they caught it, now we begin our healing journeys🥴
It started with double vision, disorientation as in walking up and down stairs I’d loose my footing, I had to start using the railing and go down sideways so I wouldn’t fall, numbness/tingling different parts of my body, losing my words (I used to have extensive articulation), stuttering, mild headaches that would last for weeks, oh and my memory! These would all come and go, like flare ups. For years I was convinced I had MS, my doc always just told me that I always was a mystery. After 3yrs of taking this to my doc, she finally ordered an MRI, and there it was, mystery solved doc! I knew something was not right! I also grew up with severe migraine, and headaches as early as 5.
So yeah, I’m trying to get through this using humour and also being my own best advocate! Neurosurgeon consulted with my doctor on June 29th and I will call back at least once a week to remind him of me lol Secretary said I’m on his urgent list. This thing ain’t bleeding if I have anything to do with it, and it’s coming out ASAP!
Good idea as sadly mine hemorrhaged while I was waiting for my MRI results (a private MRI that I paid for as I took matters into my own hands).
Our good old Canadian health care just let me down again as I was in the hospital this past Tuesday waiting to be called to change into my gown for my second embolization. Instead of calling me in the nurse came out to tell me it was cancelled and to come back next week. Was tough as she was super sympathetic so gave me nobody to complain to
I wish you the best as you get used to this new reality.
PS. I get mistaken sometimes as being from the east coast as I am originally from Ireland so I guess Irish and West Coast Canadian sounds like a New Brunswick accent.
Welcome. I’m also Canadian, from Manitoba but originally from Nova Scotia and heading to my mom’s in Cape Breton for her 85th in a couple weeks. I had a bleed in 2016, no previous indicators of the AVM. I was 48 at the time. Mine was in a difficult spot in the inner side of the left temporal lobe so ultimately went with gamma knife. For me the risks for more extensive deficits existed with craniotomy, thus the decision. The angio will be the source of the best info. Take Care, John
Welcome! It’s great you found us and I hope we can help you along the way.
I think I’ve got two things to offer for starters:
I think all of us who arrive here pre-bleed go through the same emotions. I arrived here in 2016 having taken my health for granted for about 50 years only to decide that the noise I could hear was an AVM. I got that confirmed by an ENT consultant and that confirmation sent me into quite a spin! It’s normal. So what we need to do is to help you feel a bit more in control and you’ll get there.
The two options for “surgery” are not just craniotomy vs gamma knife for a brain AVM. There’s a third approach called catheter embolisation, which is basically to insert a very fine tube to deposit some glue to close up the naughty bits and put them out of commission that way. I had an embolisation and honestly, I think it is the only way I’d have got through brain surgery so easily.
What is appropriate for you to have as a treatment will depend wholly on what the doc can see on that angiogram. So you might be offered one or two approaches (perhaps never from the list of three) or it is possible they feel it is just too difficult / dangerous to go in there and do anything with it.
However, we’ve all been there. Ask anything you like about any of this and I’d hope that by talking some of it through, by reading about others’ experience on here, we can take you from that degree of panic to a more even keel.
One of the things I found helped me be less panicked was talking to the people around me – my work colleagues, my wife, principally – about stroke and what to do if they found me unwell. What that could look like.
And I got myself a medical wristband made up for when I was out and about “unsupervised”. For example, I was required to stop driving for a while, so I made my way to and from work by bus. I felt that having a wristband, putting my medical info into the relevant sections of my phone, meant that I would be better looked after by strangers if I was found unwell in public.
So I think there are things you can do to help yourself.
The other thought I think I’d offer you is that it sounds like you’ve had your AVM forever. To this extent discovering it is a good thing: it can be assessed and a plan identified but it doesn’t suddenly increase your risk of rupture. I know it is the knowing about it that makes it immediate but really you’re not at any worse risk this month than you were last month. There’s a bit of rationalising you might do if it helps.
Welcome to the family & sorry to hear about your AVM diagnosis!
It’s refreshing to read that you’re ready to tackle this matter head on & I truly wish you all the best… hope it’s removed quickly & easy with no issues.
Keep up the positive approach & look after yourself as this really helped me personally when I went through my diagnosis a few years ago… there is light at the end of the tunnel & keep us posted on your journey… God bless!
I want to say that I am sorry that you have been hit with this news, but welcome to this corner of the internet.
I can understand the feelings you have about all of this. When I was diagnosed, I was told my only option was Gamma Knife and that it would likely take about 6 years since mine was so large (grade 4). For many days I sat around with the same feeling as you. That i simply didn’t have the nerves to sit around and hope nothing bad happens. Some days, I am still like that a year and a half later from my rupture. However, most days I manage to not think about it. With time, you will come to feel better (at least relative to this predicament) and your nerves will settle. I get out and do almost everything I used to do and spending as much time as I can with friends. I wish I had more than this to offer to aid your nerves, but all I can say is you are not alone on this trip.
My prayers are with you for all positive news (again, relative to this predicament) from here on.
Hi Phoenix, sorry to hear of your diagnosis, I fully understand the shock and concern this causes. I was diagnosed as a result of a rupture which left me fully intact thank goodness! Like you, I was immediately desperate for a craniotomy to get rid of this sucker, especially having experienced one bleed and been so lucky. However, the location of my AVM made surgery high risk (right occipital) and it was too large for embolisation so we elected for gamma knife and I am 4 years into that waiting game! Mine is a large AVM so the latency period is high. A small one can be obliterated in 2 years.
During those early weeks I was horrified and depressed at the prospect of no ‘quick fix’ and having to live with the AVM for a lengthy period. I hope you don’t have the same path BUT on the other hand, after a few weeks I quickly adjusted to the situation and I’ve had the best few years of my life since diagnosis. Today I am genuinely glad that I didn’t have a craniotomy. I find out in November how things have gone and whether I need further treatment. Open brain surgery is a very big deal involving a major recovery, whereas gamma knife is non invasive, and while not ‘risk free’ you aren’t taking all of your risk up front. I was so disappointed to have to go down the gamma route and yet today I feel that it was the best option and am glad to have avoided surgery so far. Don’t think of your AVM as a ‘time bomb’ that needs immediate defusing, try to focus on the fact that most AVMs don’t ever bleed or cause major problems. Yours is apparently giving you some issues, but the safest option may well be gamma knife, and as a small AVM you may be a very good candidate. My hospital quote a 90%+ chance of success with small, compact AVMs. That’s pretty damn good! As I said, I hope that yours is accessible and an easy fix, but just laying out my experience here to help you see that the gamma route is not so bad at all.
Wishing you all the best on this AVM journey!
Welcome. Honestly, I don’t write here very much but I always read the comments on what everybody goes through and what they have to say.
Your story sounds similar to mine. I had headaches migraines really at a young age about 5 to 6 years old.
All of a sudden, my left eye turned in in third grade at age 8.
I had experimental Botox to correct it.
It wasn’t too bad, but I went through my younger years with odd symptoms and low energy.
Then, when I was a senior in high school, I was put on Accutane for acne. It caused a brain bleed. My AVM is located in the brainstem near the ponds area.
Two weeks later, I was in Phoenix, Arizona having invasive surgery by Dr. Spetzler. They took out most of the arterial part and left the venous part of what they could get to. I was 18 when I had surgery.
I am 40 now. Through time I have learned to listen to my body. Rest when I need to. Tell people no when I need to… I have generally been able to lead a normal life with a normal job, I have one child she was born by C-section when I was 34. I have a husband.
I had Covid, and that really seemed to affect my vestibular system and the AVM.
All those words to say – that this is doable. Just be patient. Trust what your doctors say . give yourself time. Complete your therapy. Just go with the flow and enjoy life’s journey, even though it might be at a slower pace.
1 good thing about your diagnosis is that you are now in the treatment system.
I’m in UK and survived a bleed over 30 years ago and had to trust the doctors then.
Earlier treatment usually means that better recovery but sadly your Avm usually dictates your pathway, which i hope will be good.