Hello everyone, after a little debating I’ve decided to tel my story. All my life, I’ve been “out of shape” and have had dark lips. My parents would have me run on the treadmill every day to try and fix this. At age 11 (November 2017), I had a regular doctors appointment, where my doctor pointed out that my lips were very purple, and had some spots, so referred me to a cardiologist. Cardiologist found nothing, but pulled me out of physical activity till we found out what is happening, and referred me to SickKids in Toronto to get some tests done.
After a very long day of tests, a neurosurgeon met with me and my mother, who told us I had a small yet still dangerous avm in the bottom left of the back of my brain (I’m not sure what the area is called). He explained that this area wasn’t an essential part of the brain as it has no function. And we were set up for an MRI and appointment with him for a year later.
Next I met with a lung specialist and he had some bad news to break. He explained how I had a genetic disease called HHT. He told me that I had about 30-50 avms scattered throughout my lungs, along with hundreds, maybe even thousands of the smaller malformations caused by hht. They hooked me up to the oximeter and saw that my oxygen levels were at max high 80s, and when doing exercises could drop to the 50s or below. I was then set up to do an embolisation in my lungs.
Throughout the span of a year, I had my first embolisation, however it was delayed because too many icu beds were being used. I went in about a week later and had my >8 hour embolisation, stayed the night because I had to lay still as they entered through a vein in the groin. After a month or two my lung specialist (Dr. Felix Ratjen) told me I had to do another embolisation to get the remaining avms, and my Nero surgeon (Dr. Peter Dirks) decided to do an angiogram on that day.
The procedures went relatively well, as Dr. Ratjen told us that all we could do in the lung department was do CT scans every couple years as they were not able to get any of the hundreds of small avms. Dr. Dirks had less good news. He told me that my avm had a very high chance of causing problems, and scheduled a craniotomy for December of that year.
The craniotomy was supposed to have a 3 day in hospital recovery period, and when the time came the surgery was delayed yet another time, due to lack of icu beds. The surgery was done in January, and took me 5-7 days to recover in hospital.During the surgery I had a minor stroke that doesn’t effect me too much as like I said, the part of the brain it was in does noting.At home, I struggled to do things by myself, and would feel faint after standing for more than a couple minutes. Bathing was hard, eating was hard, and I slept a lot.
Let me backtrack. I have a high metabolism, and still at 15, am only 110 lbs, even though I am 5’7. I am quite small for a male of my age. The craniotomy further delayed my growth, as I was 80 pounds at the start and dropped down to 65 afterwards.
Around a month after my craniotomy I started to get sick. I felt fine, however whenever I ate food I would puke, and immediately feel hungry again. After about a week of this my parents decided to take me to the er, Where I was put on iv fluids. I spent about 10 days in the hospital because they had no clue what was happening. During this stay I was set up to have oxygen machines at the house, to which I am stubborn and don’t wear as often as I should because they’re uncomfortable. At the end of my stay I was told I simply had really bad acid reflux and could go home if I took medication for about a month.
After this was about 4 years of checks and the doctors saying they couldn’t do more. In. September of 2021 I had another angiogram, because an mri had shown 2 “suspicious fuzzy spots”. We know the other avm is completely gone without a trace, however I have 2 more in my Corpus Callosum, and we are now exploring a gamma knife to get rid of them.
A visit with Dr. Ratjen after a CT scan saw him telling me that he would like me to consider getting a lung transplant. So far, after assessing the risks and process, and looking at my quality of life, I think I decided that I won’t do it yet, however might do it if my situation gets much worse.
I never returned to doing physical activity. This situation has given me depression, anxiety and ptsd, which I am on meds for now. We are far from ending this and just need to keep going. I understand that hht and avms are rare, but the fact that I have hundreds-thousands all throughout my lungs is even rarer.
This is gonna be a long journey but I know I can get through it. Thank you all for reading!
Wow!
You’ve got a lot going on and, while you’re having a really tough go of it (and got the PTSD) actually you sound like you’re doing remarkably well.
Most of us here “simply” have an AVM or two and it blows us out of the water one way or another. You’ve clearly got a HHT diagnosis and that’s going to blow anyone’s mind. So, like I say, I think you’re sounding really quite calm about it.
I’ve moved your story to the HHT section (perhaps a bit hidden under “types of AVMs”) because by doing so, the other folk in the @PulmonaryHeartHHT group will see it and be the best people to chat to.
It’s great you found us, great to have you join and I hope we can help you a little along the way (and that you might help others).
Welcome!
Richard
Thank you. I’ve been here for a bit but I just havent been quite active.
So you have. Well, honestly, it’s good to be able to talk about this stuff (because it isn’t at all easy). So it is great to hear from you and I hope you’ll feel free to tell us how you are when you’re having difficulties.
That is quite the journey so far, thanks for sharing your story. It is truly incredible what you have been through, and I admire your matter of fact way of looking at it. Us “older” guys can learn a lot from that. I agree with Richard, having one is impactful, HHT is another level. I hope by knowing you can speak freely here we are a good sounding board and maybe can pass along some of our collective experiences.
I’m interested in the show you refer to, and will have a look. I’m from Manitoba and spend a fair bit of time outdoors, not nearly as much as I used to though! I worked in London for 3 years and did a bit of fishing on Lake Erie and Lake Huron. Make sure you let us know when it will be on! Take Care, John.
I am on an outdoors show that isn’t on tv but on YouTube. That show is called rise outdoors tv, and I’m not sure when the next episode airs. There are many others on the show and I’m not in an episode yet, but will be. Thank you for the kind words!
You’re going through so much, you’re so young and you’re so calm. You are to be admired how you’re dealing with it all. If you ever need to not deal though , this is the place to air your concerns and reach out for support! Wishing you all the best outcomes!
I am not a person with AVM , but a Parent who has a teenager (well now young Adult) who suffered an AVM bleed out which caused a stroke that has affected my daughter and we are still on the road to recovery some 2 years down the road.
But your show such courage and strength and maturity… hats off to you and my thoughts go to you and your Parents.
As you say , its a long journey and stay strong through it, and as a Parent we are always there for you. And I am sure you know that as well.
Be strong, stay positive
Nick
Thank you. I’ve tried my best to stay calm through it as I don’t really have a choice. I can either accept it or live in denial. I find that accepting it makes me much happier.
And thank you. I’ve always admired the strength my parents have as they’ve been waiting in surgery rooms and hospitals for weeks, and they’ve never let it affect them, or at least not in front of me, and it’s helped me in a major way.
I couldn’t agree more! What’s the point in being miserable about it?!
I have a lot of other disabilities and disorders. Over the years at each diagnosis I think they wait for me to break down (I also have bipolar) … I don’t break down though. That doesn’t help me. I just take their information away with me and move on!
You’re showing such fortitude and you are living your life!
I hope you get everything you need! That everything goes well for you! You so deserve a good outcome! Good luck! 
Hi there. Just wanted to say thanks so much for sharing your story with us. You are so brave and truly inspirational. Like yourself I like to think I have a pretty positive attitude towards my medical issues. I have an untreatable brain AVM with recurrent hydrocephalus. I believe my positivity has really helped me in this journey so far. That’s not to say I don’t ever have bad moments - I certainly do. I just also know its not going to change anything and I’m determined to enjoy life while I have it. Very best wishes to you and stay safe.