Hi! My name is Jonathan and here is my story

Hey! Thanks for asking.

Well the gamma knife expert said they would give me a treatment. When my other doctors heard that they told us that they will prefer not to work with the gamma knife experts together.

As I am having an 5.4 cm big very high flow AVM
They think that gamma knife is very unsafe if not impossible as a treatment. Everything that is bigger than 3 cm is dangerous to treat with gamma knife. (atleast that’s what they said, but I am honestly not really believing in the doctor I have seen a month ago)

They think an operation is the only “good” option and that I will most likely have a problem with speaking after my operation.

They were able to identify which important parts of my brain are close to the AVM with the fMRI (if that is the right English word for it?)
The part for understanding has a little distance to my AVM. Movement too

The only part that is being supplied by the AVM is the part for speaking itself. So that is what the doctors are most afraid off to lose when operating me.

Long story short NO treatment for me.

I already have a new doctor I am going to contact soon. I am 17 now (had birthday in July) and they want to check it up in 2 years.

That is just crazy in my eyes. Sorry for that long text, but I didn’t write in such a long time. If I have to add something I can’t remember right now I’ll do that haha.

Take care!

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Hi Johnathan,

Happy Birthday!

Every AVM is different and I am not a doctor so I cannot say what is the right or wrong way. I am disappointed for you though. In these situations we need to listen to the doctors. It would be terrible to lose speech.

Well, you need to see what happens. Try to live a normal life until they work out what to do.

Write some more later when you remember - or any time you feel like it. You have us here but we cannot answer very quickly sometimes.

There is a service which is free in the U.K. and it is run by volunteers 24/7. They will answer your emails if you send to jo@samaritans.org - you can talk about anything you like (feelings, hopes, fears). They promise to try and answer all emails within 24 hours. You can just keep replying and replying to their replies and they will soon know more about you. The email service is available to anyone. It is all confidential and your email address is kept secret from the person who replies to you. I thought I would mention it - sometimes people have a hard time talking to their family about fears. Sometimes family members or friends will offer advice instead of listening properly to what you feel - that is what is great about this service - they really listen and don’t tell you what to do.

Hope that helps (if you ever need it)

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Firstly let me thank you for sharing your story with us Jonathan. Please understand that you have your whole life ahead of you and the advantage you would have over many here is that you are young and healthy.

I know this is menatlly hard to digest at such a young age but just know you will have our support here in those days when you may not want to talk about things with people in person, which I would encourage talking about these things to family and friends as it is healthy… If your concerned you may wish to get other opinions and maybe a member here from Germany may be able to refer you to someone.

Please keep positive and keep doing what you love in life, except dont use your head in soccer lol!! All my life I played soccer did martial arts and even some boxing and had no issues until I found I had an AVM. I was told after my surgery that I could still do those things but to becareful, which makes sense i guess… God bless!

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Hi Jonathan,

Thankyou for sharing your story with us. Finding out that treatment is higher risk than leaving it alone is a hard pill to swollow. I found out the same thing last year and it was a big hit but like you, given the facts, I knew leaving it alone and monitored was the only rational choice.

My AVM is 4cm so not as big as yours but it is an awkward shape, “diffuse” so not possible to pin point easily for gamma knife. They told me I would likely suffer necrosis / damage to the local brain tissue and swelling if GK was attempted. Embolisation is not possible due to too many feeders. They told me like you, craniotomy is the only option currently.

For craniotomy, I would have the remaining of my left occipital lobe that works, removed - causing complete loss of right hand side visual field in both eyes. Even if I were willing to sacrifice this vision, chances of damage to language, cognitive function and right side movement or fatality is too high to consider. Only to be done in a emergency situation.

I got the news about no treatment December 2018. It does get better! I rarely think about it and just go on with life now.

In terms of education - throughout my degree, I had gradual brain damage and unmedicated partial seizures and because I had no diagnosis I had no accomodations or understanding from peers or lecturers. This gradual brain damage was because I had a 1 in a million case, very very aggressive AVM. With determination and support from loved ones - I suceeded in getting a 2.1 degree from a top 10 university in Chemical Engineering! I did have to drop out of my masters but if I had been diagnosed sooner, I’d have had help before it reached the point of my health being so bad. Not having a masters hasn’t affected my prospects at all. Your education prospects are definently not doomed and you will have the support and understanding I didn’t have - so even a better chance since you’re diagnosed at a younger age!

In terms of life and job prospects - I finally got diagnosed after university. My condition was so bad that I had a urgent embolisation. It didn’t successfully treat my AVM but the glue did stabilize it. Unfortunately during the operation, I had a bleed which led to a stroke. This has resulted in partial sightedness, memory, energy, orientation issues and processing delay. Now, 1 and a half years later: I live independently in a lovely flat, starting a new job as a software development consultant (I didn’t hide anything and they were happy to make accomodations for me), have an understanding partner, well adapted to my “new normal”, much better mental health and happiest I’ve been in years! I have chosen a differant path then my original plan, going into software development because once trained, it gives me the freedom for mobile working allowing me more breaks and rest. But doesn’t make it any less interesting. So… if you were to have a bleed, with rehab and recovery, you can still have a happy life! :muscle:

If, a new and much safer treatment option becomes available then that would be great, I’d definently consider it. If circumstances changed and a craniotomy was urgently needed, then we’ll cross that path if it comes to it. If not - plenty of people live long lives, stroke free, never having known they had an AVM! I’m not scared anymore because whatever happens, I know I’ll rehabilitate and move forward :smile:

Hope this helps!

Corrine

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Hi Jonathan,
I probably am not exactly the person you’d like to hear from (I’m a mom and Grandma), but I wanted to tell you my (and my sons) story. My son, who is now 41, had an AVM when he was 12 years old…quite a long time ago! It was a shock to all of our family, but we did what was needed. To make a long, long story short, my son, Michael, was a very good athlete and played all types of sports, but he especially loved basketball. He was on a basketball all-star team at the time of the discovery of his AVM. Unfortunately, after his craniotomy ( about the best option back in the day), he was paralyzed on his left side. He was forced to give up all of the sports he loved, and it just about killed him. He did physical therapy for 2 years, and recovered about 95% of his motor function in his left side, but was never able to play sports after that. He had tough times but he survived. I’m not saying it was easy for him, or us, but we got through it. Now, my son is married to a beautiful gal and has 4 children…one girl 9 yrs, and 3 boys, 7 yrs. old, and twin boys who are 4. He is doing wonderfully, and is loving life! So…even though he went through a very tough time early on, he came through it, and was rewarded with an awesome family and life now! So, don’t be too sad or upset. Life has a way of surprising us, and when we think things are so bad, they really aren’t! I hope this gives you some hope and vision. Feel free to respond if you’d like. I am here to answer any questions you may have.

Debbie Loftus

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Thank you! :+1: And sorry for my late response. We have the same service here in germany. I didn’t use it yet though.

One of my doctor (in another city) told me to get in contact with a hospital in switzerland. So maybe I have news pretty soon!

-Jonathan

Hey! Thank you for your message. I am already in contact with some other people coming from germany ^^. What sports are you doing now?

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Hi Jonathan or “hoi”, as we say in Switzerland
What hospital are you going to contact in Switzerland? Our son (23) has an AVM about the same size like yours. He goes for a checkup every year at Universitätsspital Zürich. He is in very good hands there, so that’s a relieve. He got his diagnosis in January 2018 after two Grand Mal seizures. Since then he has been recommended not to go under any treatment (except Epilepsy medication), but to go on with his life without worrying too much.
It is difficult for him - and for all of us who love him and who worry about him constantly even though doctors advised not to. Well. After almost two years our family is still working on getting to terms with the situation. We are all working on staying positive and on blending out the AVM.
It was and still is hard to hear from the doctors that no treatment is his best option for the time being. But then, it is also a relieve. We take comfort in the idea that we have time: We have time to plan the best treatment possible, and we have time for technology to improve even more. Our son is trying to make the best out of his time. It’s not an easy task; some days suck. But as I said, he is working on it. I’m very proud of his courage.
I wish you all the best, Jonathan. If you want to get in contact, wir sprechen natürlich vor allem Deutsch.

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I do play basketball, soccer & running from time to time… God bless!

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Jonathan,

I just wish you all the best.

You sound like a good and smart kid.

You are an inspiration.

Keep fighting and don’t ever stop trying your best.

Well done to you :+1::slightly_smiling_face:

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Thank you very much for your kind words.

I will :slight_smile: nothing else matters haha!

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Now i remember the comment :blush: