Hey, I’m completely new on this app and I’m so proud of everyone. I always felt alone with my avm but here I can talk about it. I’m from Germany and I wanted to know if the doctor is dr.chapot… ?
Because he would do my embolisation, when I’m gonna do it …
My name is Julia, I am 20 years old, and I live in Germany. Last summer, an AVM was discovered in my brain by chance. It is in stage 2-3 and located in the central area on the right side of my brain. The doctors are not entirely in agreement, but two out of three have advised against surgery or embolization because the risk of paralysis afterward is quite high. Initially, I was supposed to have two embolizations, with a 3.3% risk per session of developing paralysis. My doctor also told me that the risk of a brain bleed occurring is about 2% per year.
Because of this, my AVM needs to be monitored every 6 to 12 months. I feel very uncertain and don’t know what the right decision is. In general, I tend to worry a lot. My AVM was found incidentally during an MRI, and I have no symptoms at all.
I feel completely healthy, but of course, the thoughts are always there. Recently, I went to a sauna, and afterward, I experienced a strong pulsating sensation in my head, which worried me.
I would really appreciate any opinions or advice on this matter.
Sorry to hear about your AVM. It’s a shock to be diagnosed even though we’ve probably had them our whole life, in many cases like yours with no problems.
As you’ve learned, treatment options are not clear for many patients and there are some risks to balance. However, the risk of bleeding is really low in the short term so it’s good to take time making any decisions, as treatment risks are taken immediately. It seems most surgeons and large studies say 1-2% risk per year, and even then some bleeds do no serious damage, as I know from my own experience. So I found it helpful to think of it as a 98-99% chance of no bleeding in the next year, and take things from there
As for the sauna, I’m confident that anyone who knows they have an AVM will experience occasional pain or strange pulsing feeling and attribute this to the AVM. I definitely did the same. But also, a sauna can make anyone feel this so it’s probably unrelated. I was not told to avoid any particular activities and there doesn’t seem to be any proven increase in bleeding risks for general activities, so I think you will likely feel some strange sensations just knowing the AVM is there, but should try to relax. Easier to say than to do I understand!
Yes I was treated by Prof’ Rene Chapot in September. It was very successful but my vision was affected which may improve over time. This was a risk of my procedure so not too surprising. The risk of bleeding he said was around 6% but possibly lower for mine, but we didn’t discuss the % risk of visual impairment. My London surgeon felt it was 25% and could be temporary of permanent. Obviously your risk is individual and paralysis can’t be compared with peripheral vision loss. But I assume your 3% risk may includes a range out outcomes which may range from mild limb weakness to total paralysis on one side, any of which could be either temporary or permanent, but this would need discussion by the experts. It may be helpful to discuss that in more depth to help you understand the risks of various outcomes.
Even with the vision issue I am very happy with the outcome because he was able to cure the AVM in one embolisation and mine was at high risk of further bleeding, so I felt it was necessary to intervene. He is clearly a world leader in embolisation for difficult AVMs and the hospital set up is very good. The first step is to request him to review your scans and he should be able to give an opinion. At least then you know what he thinks and the risks of the procedure under him.
Wishing you all the very best! And happy to answer any questions you have.
Jonny
Thank you very much for your response. I’m very conflicted… Most doctors advise me against doing anything because I’m still so young and have my whole life ahead of me.
Since I have no symptoms and haven’t had any bleeding, part of me thinks the same way… but my thoughts are driving me crazy on this topic. I wonder how other people manage when they just monitor it… But thank you again d and I’m happy to hear that you had such a successful operation . God is good.
Welcome to AVM survivors! I’ve moved these posts into a new conversation for you and moved it into a category shared by our Cerebellum and Brainstem AVM patients because your AVM sounds very central (like these other patients) and I hope you’ll have more in common with them. I’d say a majority of these patients are given a “watch and wait” recommendation, since dabbling in the very core of the brain is dangerous.
Is it Dr Chapot who is proposing some intervention? We do hold him in very high esteem, based on the patients here who have been treated by him.
Looking forward to helping you to get your head round all of this!
Yes, exactly. Dr. Chapot is the only doctor who would consider doing something, but the other doctors said that with treatment, I would face greater risks than just 3.3%.
I would love to connect with others-especially those who follow the “watch and wait” approach-and see how they still manage to enjoy a great life.
I am sure that the @BrainCerebellum people are your nearest friends. I think more than half of them have been advised “watch and wait”. I hope some of them can share with you how they cope with such a plan!
I am MUCH older than you now, but thought I’d convey my experience with my cerebellar AVM. I had no idea that my brain concealed this defect.
I was 34 years-old and had never restricted activity. It was after a vacation to Mexico and 36 hours after my return home that I woke up to a sudden, severe headache. Next, I found myself in the ICU, beginning the long road of recovery following a craniotomy.
The AVM had bled. I was EXTREMELY blessed to survive, especially considering this was 1993!
I hope you will consider my experience. Even though I did not know I had an AVM, the risk increased each year. My AVM ruptured at 34 years, yet others may never do so. We just don’t know, making the diagnosis a difficult one to handle, doesn’t it? Live each day in gratitude.
We are already connected, and we’ll probably be exchanging a lot from now on, especially since we both live in Germany—that’s the beauty of being part of a community.
I wanted to ask you something here (as it might be helpful for other members as well): Have you considered getting a second opinion?
In my case, a second opinion—recommended by my doctor—helped me find the treatment that suited me best. I wasn’t eligible for surgery due to the number of aneurysms and other constraints. The only option the hospital initially offered me was embolization, a procedure that, was extremely risky and came with a high chance of me not surviving the operation.
However, my doctor, Prof. Dr. med. Thomas Liebig, mentioned the ERCM (Europäisches Radiochirurgie Centrum München) and encouraged me to ask whether I was eligible for CyberKnife treatment.
Now, I’m incredibly grateful for that second opinion.
@Juliak
Hi
I only found out about my avm post rupture. That put me in ICU just like you see on tv medical dramas. After 12 months in/ out of hospital i had a basic life.
If you want to risk a bleed then follow your neuro team who support that.
If you want certainty go with a neuro treatment team. There are risks but if you’re younger you will have a better chance to recover or adapt. You have risks every day.
I hate the scars i have from treatment but at least i don’t have to worry about a new bleed. My heart twinges when i read about those with untreatable avms.
Hello !
I have a cerebellum AVM that bled in my 30s and never knew about it before.
I had cyberknife treatment in December 2023.
Before that,while hospitalised,they tried ebolization but they stopped from fear because of the location.
The difference between mine and yours is that mine is small which means they bleed more often,and the risk of bleeding increases after a bleed so I guess that’s a plus for you.
I would definitely,in your place,ask for another opinion such as radiation treatment.
Best of luck!
Despina
Thank you for your opinion. The problem is that my avm is so located in a way that makes it very likely that I won’t be able to move my left side after treatment-in the worst case, I could end up paralyzed. The doctors say that the risk of complications from treatment is higher than the risk of a bleed… I had 3 doctors that told me this and I heard that a bleed can vary greatly and sometimes may not lead to severe consequences…
My 20 year old son has a 4.8cm AVM in his basal ganglia. It breaks my heart to see young people like ya’ll have to struggle. He has had an embolization as well as 2 radiation treatments. He is doing well and I hope you are also, Modern medicine is powerful. We will keep you in our thoughts and prayers.
I read my initial reply again and can see that I didn’t include all of the relevant information.
Firstly I did have a bleed, which was how I was diagnosed, but I was fine after that. No major problems, not the end of the world. So the ‘worst’ happened and I was ok. That’s very possible with AVMs. It’s completely variable case to case, bleed to bleed, but please done think that a bleed is always a disaster.
When we are diagnosed with an AVM we firstly want a cure. That’s normal. I was initially very keen on surgery because I felt it would ‘fix’ the problem. But as time passed my surgeons were very cautious, and advised me to take my time deciding. So, in the meantime I had gamma knife surgery which for my AVM was considered fairly low risk. I was quite stressed for a while about living with the AVM, but at the same time I can honestly say that the five years after my gamma knife (waiting for the results!) were the BEST and most carefree years of my life. I learned to accept the risk, which is actually quite low, especially if you have never had a bleed. I had already had one and probably two bleeds (bad headache in my teens) without any major problems and I was able to mostly live a great life without too much worry. I did make sure to avoid stress where possible!
So, for me I was unlucky in that I was not responsive to gamma knife, but I still see it as the correct decision to have tried it. I then looked at other options but ONLY because I had bled twice and had a large aneurysm, so my surgical team all felt that my AVM was likely to bleed again someday, so it required treatment. In the early days after my bleed I hated to hear the term ‘medical management’ which basically means watch and wait, but once I was confronted with the risks of surgery I would have preferred to have a non ruptured AVM that I could just leave alone. I didn’t though, so I took the surgery, and it cured the AVM but there were consequences. The consequences are immediate whereas the risk of a possible future bleed may be 20-30 years away and may never happen - I lost my peripheral vision on the left from my surgery which is fine and I’ve adapted well, but I can’t drive. I would still do it again today because my bleeding risk was high. Life is good and my vision may still improve.
What I’m saying is that it’s natural to seek the fix, and you absolutely should research and study this thing, but also, living in the moment and learning to live with the risk is equally important. It will probably never bleed! Enjoy your life, if you hit a bump in the road you will most probably have an opportunity to reassess. No medical advice intended and I hope this is a helpful perspective.
Is your avm in the occipital area. How is the peripheral vision - one of your eye has a blocked vision nearest to your nose? Did you lose this vision after the bleed or after the cyberknife treatment? Thank you
We are already connected, and we’ll probably be exchanging a lot from now on, especially since we both live in Germany—that’s the beauty of being part of a community.