Hi my name is Aroha (20s) from NZ and I’m a wife of an AVM survivor (30s).
I’ve been lurking around here, reading different stories from different walks of life. It’s made me feel less alone. But its come to the point where I think I need to share our own story and just… looking for comfort.
My hubby was a typical fit bloke until over a year ago he had a grand-mal seizure one Saturday afternoon. One scan lead to another and we were introduced to AVM. A month after diagnosed he suffered a bleed at the hospital, fortunately, because then the doctors could treat him immediately. They Embolized the AVM, he had a stroke during the procedure which caused him to lose his peripheral vision but other than that his recovery has been straightforward. So I thought…
My hubby isn’t the same person as he used to. He’s still a hard worker but fatigue gets to him now. He also struggles with negative thoughts and depression which is so hard to watch because he was always so optimistic. He still gets mild headaches. One thing that makes me anxious the most is his anxiety attacks and feelings of weakness. We’re so fortunate that he survived and still alive.
He has a follow up MRI tomorrow and an Angiogram in September.
I suppose the reason why I’m here is that…
I want to know if this is all “normal”
I don’t expect him to go back to his old self. I love him either way. Even more actually.
But I just want to know/hear… from relatives or wives of an avm survivor… I want to know will my fear of losing him ever go away? Is he going to be okay?
I want to know esp from those who had their avm embolized what it feels like after their procedure and how they coped with their own challenges?
It was the most terrifying experience and I’m still honestly traumatized. I’m scared it will happen to my dear husband again.
I don’t have anybody to talk to that would understand. I just want to know will our fears ever go away? How do you NOT live in fear?
Hi my name is Aroha (20s) from NZ and I’m a wife of an AVM survivor (30s).
Hello Aroha! I’m 38 married and a multiple AVM bleed survivor. As my wife and I have traveled down this road that I imagine no one would purposely go on called AVM recovery, though I’ve learned 3 main things.
- You and your husband are your best advocate. No one else knows what you go through but you, so I would recommend a journal of diary of sorts regarding medicines, disease manifestations like seizures, bleeds, etc.
- I would store that somewhere where you can grab it quick. My wife and I use Google keep because we can share that between her office and me at home, but whatever works for you.
- Keep a record of medication used because that will be your best tool in speaking with doctors.
This site is invaluable but it is not to take the place of your treatment team.
Welcome to the journey. I hope you find some of the answers you both are looking for. Blessings as you continue!
I’m sorry to hear what you are going through.
Is his depression due to not being as fit as he was? Or as active? I know for me working out and running is a foundation and when I cannot do it I get very down and out. After my bleed being active was what kept me grounded. If I wasn’t I was a depressed anxious jerk.
Counseling could also benefit him. Talking with someone even about mundane things will help.
I hope things get better.
It’s understandable about being concerned about him after he’s back home and after the surgery. I was just 10 when I had my AVM rupture. After the surgeries I still would go to therapy for a couple months. My parents were a little paranoid for me just being your average 10 year old after surgery. I would go riding with friends on my bike and they would put a 4 wheeler helmet on me instead of just a bike helmet. Other things I was held back from for a couple months were the treehouse, trampoline at friends, no baseball for a while and definitely no football. The next year every thing was back to normal.
Thank you for your advice - very practical! I do love taking notes of everything so I think I will start doing that again. When my hubby was in the hospital, writing kept me sane.
The neurosurgeon and neurologist have been really supportive and informative which is great. Unfortunately not a lot of doctors here knows about AVM so finding a good doctor that is empathetic and tries to understand is a challenge but I know we’ll get there.
All the best to you and your family!
Yeah he gets down when he can’t do much. He also takes an anti-seizure medication that has those side effects. His neurosurgeon reckons that he can wean off taking the pills but we’re waiting after his Angiogram and when his neurologist is happy.
His deficit is another thing too. He says it doesn’t bother him but I think it does. Especially when he’s driving he gets those anxiety. I too hope he gets better. I just need to learn to be more patient and trusting that when he says he’s okay - he IS okay.
All the best with your journey.
Yeah I think I am paranoid. It’s nice to hear that things went back to normal. I hope that my hubby has the same recovery. Next month we are going on a ski trip and he loves snowboarding so we decided to go with the surgeon’s clearance of course. But I already feel anxious.
I have to much respect for AVM survivors because they just learn to get on with life and not let AVM stop them from doing so.
Hi Aroha, First off welcome to the family! Im in Australia so as neighbours and as someone who found out he had an AVM at 30 and had a bleed 1 month after diagnosis AND was married for only 4 months at the time I can speak from experience… first off you are not alone and things will get better in time like everything in life it heals with time, believe me… its natural to be scared as my wife was and still is after nearly 10 years always worried about what I went through, but as men we will always say we are ok and put on the brave face because we know that you guys are worried also… in a way we kinda blame ourselves I think so we dont want you guys stressed anymore than what you need cause I can tell you it just stresses us out and doesnt help anyone.
Best advice is you and your hubby know what your relationship is like and the only way forward is to work with him together to be by his side… being positive and strong is a great thing that will help him… I wont lie and say its easy cause its not, BUT i will say there is light at the end of the tunnel and this event is something he will remember everyday of his life…
10 years on, 3 kids later and feeling kinda normal I still feel the trauma of what I went through emotionally and physically… we celebrate the dates I had my bleed and the brain surgery cause its a time to be thankful I am alive here to tell my story… always remember there is someone out there much worse and to be grateful for what we have as much as it has affected us as humans… be strong and sending prayers to you guys… God bless!
I think everything you’re describing is completely “normal”. I discovered my AVM aged about 50, worked out myself what it was (and got a bit shocked by it) then went to get a proper diagnosis and the bottom dropped out of my world when the doc confirmed “AVM”. It’s a massive shock. Everything you took for granted suddenly isn’t reliable and life heads in a different direction.
My dural arteriovenous fistula was embolised about a year after my initial detection and while an embolisation seems like a really low-impact way to have a neurovascular operation, it took me a further year to get back to feeling like my head felt “normal”. Since your husband has had a bleed, getting back to near “normal” is likely to be longer than for me.
One of my stepping stones to being a bit more ok about what had happened to me was getting a medical wristband. My worry through waiting for that first year was that I might have a bleed. I was travelling to work by bus or with friends (not being allowed to drive) and so I was mostly in the company of strangers. Having a wristband – for me – was my way of helping to ensure that if I was suddenly found laid out on the floor, a medical band would perhaps help me get help sooner. It helped me relax having it and as I had operations, I got a new band with updated info for something like £12 a band. Easy. So, I would talk to him about what his worries are and if some simple things could help put one or two of them away.
How did the MRI go? I guess you may still be waiting for the report.
Very best wishes,
Thank you so much for sharing your experience. It has given me hope for us. We’re both still traumatized from the experience - its only been 10 months since his bleed.
Our marriage is definitely stronger and every moment we spend with each other is special. You’re right, it’s best to count the blessings rather than focus on the what ifs. It’s easier said than done tho especially when Ben has his moments like anxiety, fatigue, feeling weak… those things trigger my anxiety so much! But he is so positive and never complains.
Thank you so much for your encouragements!
Wow what a story!!! It would’ve been a shock indeed! It was a shock for us! He’s so young and fit and then one day he had a seizure and everything just went down hill from there. Did you only have the embolization as treatment?
Ben is able to drive now but sometimes he has those weird funny feelings and he gets so anxious so he pulls over and just tries to calm himself down. He says he’s scared that he might have another seizure or a bleed. A medical wristband is actually a great idea thank you! I hope your recovery has been going well?
We got the MRI result and the report mentions a possibility of residual AVM however the image have been reviewed by a neuroradiologist and he thinks the area of concern is unlikely a residual but could be related to previous hemorrhage whatever that means.
Ben has an angiography in September and it just can’t come soon enough. I try not to be overly anxious and tell my self to trust the physicians but still its so hard.
Yes, I just had an embolisation. It seems like a really uninvasive way of fixing an AVM but I felt very strange for at least a year afterwards. I got checked out a couple of times and finally had to just conclude that all really was ok and I just needed to get used to the new plumbing in my brain. All of that settling was through 2018 and I’d say through 2019 and onwards, I’ve relaxed about it and do everything as normal again.
It’s a good thing to stop driving if you feel unwell and don’t know what’s going on, so that’s just sensible. If he does get further seizures but is able to predict robustly when they are about to occur, it may be he is able to carry on driving. It is when they arrive with no recognisable signal that driving is too dangerous and we absolutely must stop permanently.
A “previous hemorrhage” means he has had a bleed from his AVM or possibly from some other anomaly. When you have a bleed, it obviously leaves old blood in places it shouldn’t be and it shows up on the scan, so what they are saying is they can see something that looks like a historic bleed on the scan.
It is hard but September is not that far away. With the coronavirus thing going on, time is going at a different pace this year, I think. I can’t believe we are well into July already. OMG!
Very best wishes,