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AVM Survivors Network

Hi! My name is Jonathan and here is my story


#21

Jonathan - You are being very Brave for a young man. I was 11 years old back in 1983 when my AVM hemorrhaged. We didn’t know I had it, I had never had any symptoms. In 1983 there were NO -MRI’s, no Gamma Knife and no Embolization options. I had 13 hours of old fashioned brain surgery. I don’t really know what size it was, fairly large, and there was no grading system at that time, so I don’t know that either. I just know that they told my parents I had a 50% chance to survive the surgery, and over a 90% chance that I would be paralyzed, blind, or have speech issues on my right side. My doctors said I’m a walking, talking, seeing miracle. They told my parents before I woke up that if I was ok, it wasn’t because of anything they did. I don’t know why God gave us that miracle, but He did. So believe and focus on the positive. You have imaging and treatments that are getting better and better each and every day. See if you can find another patient locally that has gone through this to speak with. I’m sure this group will help. If you can send your imaging to there doctors in Europe and even North America do so for a 2nd, 3rd or 4th option. Keep talking and sharing.


#22

God Bless all of you. Maybe this website is not for a grandmother of a very young susvivor, but it has helped me recover from her incident with AVM. When my grand daughter gets old enough, I wish her to comment. She had one rupture two years ago. It has changed all our lives as loving relatives and friends. Maybe, we hold her a little too tight when we give her HUGS. Her mother has tried to limit her activities, but life is too short. We are very careful and watch her carefully. She loves gymnastics. You mentioned personality changes. She seems happier. She is now our comedian with her wit and spontaneous funny comments. She has had a lot of therapy for balance and has had vision issues. The medical team she has at Texas Children’s Hospital in Houston is awesome. Doctors are students in their field of expertise, learning more all the time. Listen to them as they listen to you. Share your life struggle with AVM. Thank you & God Bless


#23

Hey! That must have been really hard for your boy and of course also you. I hope he is OK??
You are totally right. I am not lifting things that are “too heavy” to keep the pressure low. My next monitoring will be in 3 months :slight_smile:


#24

That are great news! I hope you are feeling well and that you don’t have any more pain.


#25

My name is Julie and I have read your story and, although I haven’t written anything is years and years, I found your story quite interesting, not the word I really want to say, but just can’t think of the "correct"word.

My AVM story is quite similiar to yours in the beginning. I had “seizures”, first one I can’t remember is when I was 9 yrs. Originally the seizures were difficulty speaking and right arm didn’t work. I didn’t really tell anyone because maybe I was imagining it, or people may think I was making it up, so I keep it to myself. When I was 11 yrs old and I was grocery shopping with my mom, the “seizure” happened again, and I couldn’t talk when my mom asked me a question. My mom realized something was definitely wrong and she rushed me over to the hospital. I grew up in a very small town in the middle of nowhere in Alberta, Canada. The doctor’s did some tests, then referred me to another doctor in a small town, but not as small as where I lived for a cat scan. Finally got an appointment after a month and he said that they were some “abnormalies” in my cat scan. So he referred me to a neurologist in a big city, another wait, who referred me to a neurosurgeon, another wait… Finally at 13 yrs old ,1983, I was told that I had an AVM about the size of an orange in my brain. After a couple more appointment with the neurosurgeon , I was told, at age 15, that there was nothing that they could do.

And yes, there were things that the doctor said I couldn’t do and yes there were things that I was that I was thinking that I was going to die, a lot of things but life went on…what could I do?

After moving to Calgary, Alberta, still every year or less having an MRI, getting the results, nothing had changed, there was a treatment, brain surgery, that they had studied and done in Sweden. The neurosurgeon looked into that further and they were 2 other hospitals doing the surgery, San Francisco and Toronto. So after a few discussions, I was going to Toronto.

Short story: I had the operation, but it was tube going through the groin ( can’t think of what it was called) to my brain. Now, in 1993, 97% of these type of surgery worked out with positive results, unfortunately I was 1 of the 3% that I had major problems. Almost died, had a stroke on the operating table because 1 of the blood vessels burse, … I was in a coma, then had a lot of therapies, speech therapy, physiotherapy, occupational therapy, etc. I had still communication problems, right arm is paralyzed, right leg dragged somewhat, etc

My operation was 26 yrs ago, and I am sure that a lot of AVM that “couldn’t be fixed” and a whole easier now.

NOW I DON’T WANT YOU TOO BE WORRIED ALL THE TIME!!! I was 1 out 3% 26 yrs ago.

Just important to due your research!!!

Anything brain AVM, looked at it, any treatments, reasearch it, any operation, research it!!! Unfortunately you probably won’t be able to do sports the way you use to, but there is life AFTER being diagnosed with an AVM, it just may NOT be what you expected!!!

For me, I just want you to know, they is going to be changes, that is just the way it is!!!

Be strong and all the research, that I didn’t do, you should do!!!

Julie


#26

Hi Jonathan,

Thanks for posting. I am a little concerned that doctors have written your AVM off as untreatable. My AVM is about 5 cm and was treated by Gamma Knife. Why don’t you get some second opinions? Maybe write to the doctors at the Royal Hallum hospital in Sheffield in the UK (where the Gamma Knife was invented I think) and some other places. It is worth the trouble to check it all out because you have the rest of your life ahead of you. However, don’t get too good at football because we English don’t like it when Germany always beat us. OK? :slight_smile:


#27

Hi Jonathan. I’m really sorry to hear your experiences. No young person should have to go through this. But unfortunately some do. I have an AVM of the Cerebellum which made itself known when I was 14. Like you I used to get severe migraines which increased in intensity from when I was 12. Turned out they were in fact a symptom of hydrocephalus caused by my AVM. When I was 24 I was offered my first MRI scan which of course revealed my AVM. I was immediately told it was untreatable, that it was too deep in my brain to reach without severe risk of deficit. So surgery isn’t an option for me at all. The opinion of my neurosurgeons was and still is to leave it well alone. So this is what I have done. I am 45 now and my AVM is unruptured. All the best Lulu x


#28

Wow, thanks for telling me your story. I am just very gratefull for this network and all the people I am getting to know better through this. It is like we all have some kind of connection because of our condition… I can’t imagine what you had to go through… I hope you are feeling much better now even though you had major problems with your treatment. I am thankfull that I am living in a time where medicine is much “better” now. You are one of my heroes. just like everybody else commenting on my story. You had to go through horrible things but you went through and you stayed strong. You all are great personalitys and I can’t tell you how happy I am that I met all of you. Thank you <3


#29

Haha!! :slight_smile: thanks :stuck_out_tongue: … When they took my angiogramm pictures in may 2018 they said there is probably nothing they can/will/want to do because the risks are too high… BUT the good thing is that I get a special team of doctors which includes a “gamma knife expert” from Marburg a big City here in germany. They are really popular in our country soo I am positive (atleast most of the time) for the future… Thanks for your message :slight_smile:


#30

Hii :slight_smile: that sounds like your migraine is similiar to mine… it got worse and worse to a point where my triptan (special medicine for migraine for everyone who doesn’t know) didn’t work without taking way too much pain medication. I got more symptoms in 2017 like a little paresthesia (I hope that is the right word) in my right arm and leg…

BUT the good thing is that I didn’t have any migraine attacks since summer 2018. It is interesting that your doctors were able to tell you that your migraine is caused by your AVM … my doctors say that they can not tell me for sure where the migraine comes from but that is fine as long as I don’t have those headaches anymore ^^

Just as for everybody else I wish you the best possible things for the future. It is great to hear you didn’t experience any bleedings. And it gonna stay like it that is for sure :slight_smile:


#31

But it is! This website is also for support. You don’t have to be the patient… and you can still suffer. And I am sure there are many days where you are worried what could happen with your grand daughter. It is great that this website helped you with your recovery from such stuff.


#32

Thanks so much Jonathan. And of course I wish you all the best too. Not sure if I elaborated before, but my headaches were actually attributable to a build-up of cerebro-spinal fluid in my head (hydrocephalus). For me this is a secondary condition related to my AVM as its position blocks CSF’s normal escape routes. The fluid presses on the brain hence the headaches. All the best and stay brave. Lulu x


#33

hey Jonathan,
Wann immer du mal reden willst kannst du dich gerne melden. Mein Avm ist vor 4 Jahren gerissen und ich bekam im Nachhinein gesagt, dass die Ärzte nichts hätten machen können, wenn ich davon davor gewusst hätte.
Meine Op würde dann in Münster durchgeführt und ich führe mittlerweile wieder mein Leben fast wie davor. Allerdings hast du ja schon ein Experten Team in Marburg gefunden.
Ich wünsche dir alle Kraft der Welt!
Schöne Grüße
Mario


#34

Dear Jonathan:

I am writing to let you know that things will get better. You just have to remember “everything happens for a reason,” and “we only go around once in life–enjoy it.”

I know these are facts that someone my age (63) would give you now. However, these are facts that I have lived my life by. You can too.

Here’s my story: At the age of 48yrs I had an AVM stroke and was in the hospital for 11 months. During that period I had many problems: seeing (say double), eating (had to use disabled heavy utensils to keep my hand weighted down when I ate), and walking (had to use a wheelchair to get around).

During that stay, I had three brain operations with no guarantee that it would improve any of my situations. In 2018 of mid-December 2007 I moved into a residential care facility. At first, I found that my vision, walking, and eating had improved but it took me 20 minutes to tie my shoelace. In time things improved and as the years processed so did everything else.

Well, many years later I had other issues: used a cane and now a walker) but I am happy and was so as the year progressed. I am a happy person overall but the situation never brought me down. Yes, I had other issues now but still, I am positive and move on.

The moral of this story for you at 16 is that life will present you will many difficulties but you “can” move on and be “positive” and live your life.

You have a lot ahead of you and you are only 16–do not let this get you down. Just remember that me and others like me “accept life” and move on. You can do the same–you can just remember that there are others that have more wrong with them and “they survive,” so can you! Really you can…I am not just saying that to make you feel good…I am being 100 percent honest with you.

I too felt like you when I first got my AVM and was able at 45 to move into a residential facility and found this WEBSITE. It saved my life…I desperately need ed to talk to someone and this site made it possible. You will fall in love with this site too! Accept your situation and move forward…in time you might move away from the site but like me you might come back…now at 53 and want to give back to someone who needs a hand.

You will be fine and if not…you will live and more forward…you can and must be positive–I know you can do it. You are strong! Have a wonderful day in Germany it is raining here in San Francisco but I see the sun in myself…the world has changed but I am still the same positive person. Again, remember that “we learn nothing lasts forever” and we only go through this life but once…please know you are here for a reason and although it may not be clear now…in time you will see what it is. Be strong…you are a good person!

All the best,

Judie (San Francisco)


#35

Hey, thank you so much for all the positivity :). It is always great to get to know others better so thank you for commenting. I am sure that I’ll find the right way and I don’t want to let this get me down and this website is one of the reasons why.


#36

Hey Jonathan! My name is Hannah- sorry for the late response! Believe me- you are not the only one going through this struggle. I too am young and felt completely out of place and alone when I learned about my AVM. I had my AVM burst/rupture when I was 17 in 2016, but I initially had the AVM sitting in my head since I was born (but wasn’t aware- I had no headaches, no signs to show that I had the AVM). Every AVM story is completely different because of so many factors. Thank you so much for sharing your story, and I hope the advice we give you can help! From your story, here’s just a few things I wanted to hit on:

  1. Before my injury, I also was (and still am) a good and hardworking student. For me, yes, I had to regain my ability to do homework. When my AVM burst, I forgot how to read, write, talk, comprehend information, etc. However, through time and a lot of therapy (ST, PT, and ST), I am basically back to how I used to be. Some things take me a while to comprehend and remember information, but I have accommodations at school to allow me the time I need for tests. However, because your AVM is located at a different spot than mine was (mine was deep inside my brain- not sure the exact location), if you have surgery for your AVM (or if the AVM bursts), it is going to affect your brain differently. Every AVM affects people differently because everyone’s brain is so unique and different.

  2. When my AVM burst, I had no idea how it was going to affect me- school wise, academic wise, etc. I didn’t know if I could go back to school or not. My doctor advised me to take a year off, but my mom didn’t agree. And I’m so glad she didn’t follow the doctor’s recommendation. I went to a Rehab Hospital and went through Neuro rehabilitation there about 6 months after my AVM burst, and then went back to school and shadowed there after around 7 months after my AVM burst. Getting that time to go through therapies, work my brain, and yet also rest my brain I believe truly got me back to doing normal things again.

So, to make a long story short, if something does happen to you, and you can’t follow your classmates, and your life changes, it is perfectly OKAY. Life has a way of making everything beautiful in its time. If something changes, embrace the change, and be and create a new version of you. But just because something with an AVM happens to you does NOT by any means mean that YOU will change. You will only grow as an individual, and grow in your wisdom and understanding because of your experience. A friend of mine that had an AVM rupture had a completely different story than me, but she had to be behind in her class and couldn’t do all of the same things that she was able to do before. But she is happy now, and likes her life the way it is, and her AVM story inspires those around her.

  1. For advice to stay healthy: ALWAYS listen to your doctors (especially now since you have an AVM in your head). I’m not sure if it is smart to be running and doing any sports because that could rattle the AVM, making it more susceptible to burst, but make sure to ask your doctor about this. I know you love sports, but your safety and health should ALWAYS come first. Also, it never hurts to eat good food and drink a lot of water- your body reacts better when you treat it correctly.

If you want to hear more about my story, feel free to ask and/or go on my last posting (on that posting I explained my story and asked questions as I was struggling at the time). I want to help people with questions and let them know that everything is going to be okay. I hope this helped! I really wish the best for you. If you want to talk anymore about this or ask anymore questions, please feel free to reach out!


#37

Thank you for your message <3. It is great to hear that your recovered so good (as far as I can tell by your message) and that you can keep learning in your school. You are such a strong person (just as everybody else here of course). I am still very new in this whole AVM “thing” but I am thankfull for every advice you are giving me. I am sure I’ll message you soon :slight_smile:


#38

Hey, I am not sure if I already answered your message… because I can’t see one… so sorry if I already answered… First of all thank you for your message. Every message is helping me a lot. I hope you’re having your seizures less often since you are taking medications for them! I really want to travel by plain as my family never had the money to do that and now I am allowed to so I am really looking forward to my first flight in a plane :D. Knowing that there are a lot of things that we can’t do is hard of course. You found a way around those things and you have new things to be passionate about. That is great and I hope I will achieve this too one day. I still play piano and I always be able to do so that is for sure! :slight_smile: My next goal is to finish school with good marks and go studying :slight_smile: I really don’t know how I would be feeling if I didn’t find this network with all those great personalitys like you are for example. Thank you very much.


#39

Danke für das Angebot :slight_smile: ich werde mich bestimmt mal melden. LG