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AVM Survivors Network

Hi! My name is Jonathan and here is my story


#1

Hello! As you can read by the title my name is Jonathan. I am a 16 (1/2) years old and I am living in Germany, so sorry for any mistakes! My whole “AVM story” started in december 2017 when I had an MRI because of my Migraine which got totally bad in this year. I had more and more migraine attacks. After the MRI a doctor told me that they found something they can not “clearly say what it was” but that things like those are good treateable. Of course he didn’t tell me what they found because he thought I might be scared and worried. With almost no informations I went back home and kept doing my stuff. After only a month I went to another doctor which told me that I have an AVM. He said that I am “not allowed” to do any sports for some time. That was really really hard as I played soccer for 9-10 years of my life and it was my greatest hobby! But I did as he said.

In May 2018 I had an angiogramm so that the AVM can be seen better. ( I also had 2 migraine attacks that day, one where I wasn’t able to talk anymore but that isn’t so important)

Again the doctors didn’t tell me really much… only that my AVM is between 3 and 5 cm big and that it is located in the center for movement and speaking (should be the left frontal lobe I think.) As I also wasn’t allowed to be part of PE in school I soon couldn’t handle that any longer and started to participate again. I am still not playing soccer to this day and probably won’t be able to do it in the rest of my life or atleast SHOULDN’T do it!

On Tuesday 2 weeks ago I was meeting my doctor again for the reviewing of my angiogram. I didn’t get any good news. I already knew my AVM was difficult to treat because my vessels are so small and there are soo many… so embolization would reach the healthy parts of my brain. Operation is not possible because my AVM is pretty much in the left middle of the brain. And Gamma knife is only possible for AVMs that are less than 3 cm big.

On that day he told me my AVM is ATLEAST 5 cm large/big if not even bigger. The blood flow is strong not extrem but also not weak. I have NO aneurysm.
They already told me that if I have a bleeding there a significant chance to be half side paralysed and I might lose my speech completely.

A group of specialists are now looking at my pictures and I will have 2 MRIs in may this year. One normal and one fMRI to see how much the AVM is affecting those areas of my brain. If the AVM is affecting my left frontal lobe “too much” there I will never be treated.

I am probably one of the youngest Member of AVMsurvivor but I still hope that you are honest to me and that you can maybe give me some advices.

I am a very good student. I am very concentrated and I can work fast and effective and that is one of my fears… I don’t want to lose this. I am extremely interested in natural sciences and no day goes by without me watching Videos about the greatest achievements of science or talking with my uncle about space and the big bang I love this!

What if I won’t be able to do that in the future anymore? I can’t imagine getting “bad” in school and not being able to come along with my classmates anymore.

One of my biggest fears is to be a “different” person after a bleeding or a treatment. Do you guys have experienced a change in your identity ? I honestly would rather die than becoming a different me.

And do you have any advices how to stay healthy in terms of AVMs? My blood pressure is totally normal.

Any messages are greatly appreciated thank you all!


#2

Hi Jonathan! Sending you love and healing energy :hearts::hearts::hearts:
We can never know anything in life for certain unfortunately. For health, I have a few recommendations. Feel free to message me, I’d love to chat! I have made a post about some health advice that works for me and also posted some of my personal avm story on my page don’t mind sharing more if interested. I’m 27 living in LA but originally from Finland/Russia :slight_smile: Stay positive kiddo!


#3

Hi! I never imagined someone would comment so fast after my first post. Thank you very much! I just read one of your posts today. I am really looking up to you as to everyone else on this plattform. You must have suffered really much in the past and probably still do! It is great to meet such a strong person. I’ll message you very soon :slight_smile: thanks for the offer :heart:


#4
  • some things that have helped in regards to health etc.
    Also I noticed you like soccer. I don’t think you should stop playing if its something you love but maybe be more careful and cautious and maybe don’t play on a serious team more as a hobby not as intense. Maybe you can be a soccer coach for younger kids or something :slight_smile: just some ideas. Don’t let this avm rule your life, find ways to work around it.

#5

I will :slight_smile: tearing up a little :stuck_out_tongue: I didn’t think talking to others with the “same” condition could give me such relief. I’ll stay positive :+1: :slight_smile:


#6

Please, please listen to your doctors. They know what is best for your health.


#7

Hello Jonathan and welcome to the group. I can under stand and relate to how you feel. At age 10 I had my brain AVM rupture. Didn’t no I had one until the bleed happened and it changed a lot of my life.
I ended up having 4 surgeries done because of the rupture. First one was to stop the bleeding and the other 3 were to remove the blood clots that had formed.
This did change a lot of my body physically and some emotionally. Physically I was paralyzed on my right side for a month. Had a lot of therapy.
My emotions were changed mostly because of stress and was tiered a lot. Reason I was tiered was because of the medication I was on.
The years 2000 to 2002 were the crazy ones. My story is a long one. If you have any questions just ask. Best of luck and keep going strong.


#8

Hi! I am sorry to hear that you had/still have to go through such stuff. How are you getting along with your emotions now? Did somebody tell you that you “changed” in person (for example being more friendly/ unfriendly or rude or not talking as much as you maybe did before) It would be great if you can answer me that question.


#9

I am :slight_smile: especially because I am still growing. So is my brain and maybe (hopefully not) the AVM. I don’t want to risk anything of course. I’m glad I did not inherit the high blood pressure!! of my uncle and grandfather.


#10

Hi Jonathan! Welcome to this fórum and feel free to ask anything :slight_smile: I think you need to focus on the positive stuff …you have found your avm before it rupture and you are young and medicine is always changing …some people here didnt had any possible treatment also and then appearead Gammaknife :slight_smile: I also did lots of things during my life that increased the risk of avm rupture and it only happened when I was almost 33…you are new here but you will see that there are so many cases and avms are so unpredictable :confused:
I had yes many personality changes after the bleeding but if they were due to the neurologic deficits or the wake up call that having this disease represents I dont know .One doctor once told me "you are you " and I got him .You are you Jonathan,you have yours interests ,and dreams and personality ,even if the worst case scenario happens (that it wont ) neuroplasticity will always turn you again to you :slight_smile:


#11

Hi! Thank you for letting me know a part of your story. I hope you are getting better and better! :slight_smile: Are you having therapies ?


#12

What changed the most for me was I became more shy. Mostly because I had struggles with my short term memory loss. For instance I would forget people’s names that I knew since preschool. It was a struggle for a while. I think it was also a struggle from the pills I started on. I was just age 10 and was taking 1500 mg of seizure pills. Side effects were thought processing and sleepy. Fell asleep in class a couple times. Teacher would give me a soda to get some caffeine to wake me up. Got used to it after a month. Only problem no more caffeine. :joy:


#13

Thanks :slight_smile: I do phisiotherapy yes :slight_smile:


#14

So did you get used to it?


#15

Yea short term memory is still a bit of a problem but I keep notes. Some times my boss wants me to do multitasking at work so I just tell him to text me so I can keep notes and mark of what’s done. He understands my struggles. He knew my family before my AVM even happened.


#16

I already read that somewhere :slight_smile: it is great to have an understanding boss (I mean I can only imagine it ^^.)


#17

Hi Jonathan. My son’s AVM burst when he was lifting weight. He had no previous history of migraine. I think you should avoid exercises which increase your blood pressure so to reduce the risk of the AVM bursting. Keep monitoring and find a good neurosurgeon . My thoughts are with you, I wish you the best of luck


#18

Hi Johnathan my name is Katie I had a brain hemoridge when I was 17 and while in hospital they discovered I had a AVM I had to. Undergo 8 hours open brain surgery to have this removed this all happened to me 2, years ago I’m 19 now you will be fine I stay in Glasgow Scotland and the Surgeons here were amazing keep strong and Good luck xx


#19

Hi Jonathan! Welcome to the group it is not a easy thing to go through. I wrote in a journal for a few years to get my anger frustration and sadness out, i believe that it helped there are days you have anger and that’s ok you should grieve for the loss of who you were prior to the AVM.
No one remains the same as they were people change all the time through medical issues or tragic issues and that is ok too. I try to remind myself that there are people who are gong through harder things than me. So remember that you are very strong you are here on this earth for a reason people love you and need you!


#20

Hi Jonathan! I’m Ellie, and my story is also very similar to yours.

I haven’t really posted much on here, I just read through it once in a while. This time, I wanted to reply to your post.

I am a 20 year old female with an AVM in the left lobe of my brain! Just like you, it is very large and considered inoperable. Doctors usually say the size is a grade 4 or 5. I have known about my AVM since I was 12 years old. Although, I only found out because I was getting seizures on the right size of my body, primarily my arm. After all the tests, the best opinion was to not operate unless I bleed. I take medication every day to help with the seizures, and I go on about my life.

Currently, I am a student at a University away from home. I work part-time on campus, and I live alone. I have friends, and a loving boyfriend, who see me no different than normal.

DO NOT LET THIS IDENTIFY YOU! Your AVM does not define who you are. There are so many people out there who have AVMs and are unaware of it. In a way, we are lucky to know this about ourselves.

I love going out and dancing. I really enjoy music and playing video games. I like traveling, and I have multiple tattoos! All of these things are things I found to be fun while having an AVM.

I was also told I could participate in any sports. I am not allowed to get on roller coasters. Can’t over work myself or get too stressed out. To be honest with you, all this took a toll on my life, until I found other things I am passionate about. There’s a lot of things we can not do. For example, I can not give birth naturally, and once I decide to have children, my pregnancy will be risky. I am not supposed to be drinking, but I drink socially, and I am very cautious on how much I am drinking. If I am being honest, I have always wanted to try weed, but I know I can’t. I wouldn’t do any kind of drug that would put me on a high. It is very tempting, especially since I attend a “party school”. Find friends who are not interested in that type of stuff. In general, more of the “thrilling” parts of life, we can’t do. Sports, roller coaster rides, jumping out of a plane, bungee jumping, weight lifting, etc.

To answer how to stay healthy, just live you life the way it is now, and don’t stress about things you can’t do. You are not alone!