Hello everyone I’m ram from India, my avm is grade 4 and doctors said it’s not operable but he also said that srs is the only option to cure my avm but their are certain risk involved, I donno I’m in a dilemma that do I have to take my chances or just leave it like that please I need suggestions
It is good to hear from you again! Did the doctor indicate the level of risk or the types of risks she or he perceives?
There are certainly risks with any of the procedures that alleviate an AVM, so it is not unusual to have to make a difficult choice. We have all been faced with a similar problem.
From my reading of stories here, there are risks associated with receiving a high dose of radiation, of possibly zapping a bit more brain than the exact target (but it is a very focussed way of directing radiation at a target). There are also risks of oedema (swelling) but this can be treated and there is the risk associated with how long it takes for the radiotherapy to work: it is possible that you may have a bleed before it is fully fixed. There may be other risks that I’ve omitted, too.
However, if this is your only option of treatment, the balance is between the risk of leaving it alone versus the risks of treatment. It is a very difficult choice and the only person who can make that choice is you.
When I had my AVM busy making whooshing noises in my ear and making me dizzy back in 2016/17 I had to make a similar choice (but I had embolisation, so different risks). The way I rationalised the decision for me was “Do I believe this treatment is important?” (And am I comfortable with the expertise of the doctor?). If I left off having treatment, did I feel that I would be healthy longer than if I took the treatment? For me, that answer was “I think my AVM is developing noticeably over time (it was getting louder and I was getting more dizzy month by month)” so I was convinced of the need for treatment.
As for the doctor, he was well known, with an odd patient manner but I had him down as more of an engineer than a conversationalist and rationalised to myself that an engineer was exactly the person to trust my brain to for a day.
So maybe rationalise the pros and cons for yourself and satisfy yourself which route is best for you. There’s no “right” answer, or at least I can’t lead you to an answer: that would make me very uncomfortable: but hopefully I can encourage you in your thinking about how to choose.
I hope something from these rambles helps you.
Very best wishes,
Thank you for advice and suggestions, I have spoken to my doctor he said that right srs is not preferable because there’s no emergency symptoms I’m totally healthy although sometimes a light dizziness but he said me to just observe the avm year by year so that we can come to a point where srs is needed for sure until then he said to observe the avm by taking mri’s. But keeping this thing In my head I can’t even conc on my career I have that thought that I can burst anytime and go to the emergency and my career will be in the middile of the way left so I’m not understanding what choice do I have to make
So what risks of SRS surgery did he suggest?
Sometimes the doctors prefer not to do the surgery because they expect that they could do you a significant degree of damage. In these circumstances, they seem to suggest watching and waiting until the impact of the AVM on you is such that it is clearly better to try to fix it than to let it get any worse.
However, SRS surgery will take a number of years to be effective, so (without understanding your case, and I’m not a doctor, so I can’t properly understand your case) one of the other things to consider is not to leave it too late.
So I think you need to understand the reasons why the doc is preferring a watch and wait plan. It sounds like either he is not confident (so you might get a second opinion from a different hospital) or he just knows that operating on your AVM is liable to do you some damage, and therefore letting you live a fuller life now is better than acting immediately.
It does sound like he doesn’t recommend rushing into surgery, so getting a second opinion is a possibility.
I do understand how difficult the choices are that you’re being presented with. And I do relate to the “ticking time bomb” feeling of it being there but you need to be sure as to why the doctor is making the recommendation that he is.
Did he indicate any other risks than the ones I mentioned?
He actually said me that my avm is deep inside my brain so if the srs cause any internal bleeding then to worse that the current situation and he also said that right now I don’t have symptoms or any kind of bleed so he said my avm might rupture at all sometimes for people if they keep their bp normal
so he suggested me to wait and observe and be checking every 6 months before rushing into the dicision and making the life worse than now and feel regret later, and my avm was activated due to covid before that thers was no sign of it due to covid it got big and thers is a 50% chances for the avm to slowly shrink once all the radiation of covid is out of my system
So the “deep in brain” bit sounds to me like operating on it could do you some damage which is why he’s suggesting a “watch it” approach. While you’re bothered by the ticking bomb, it sounds sensible to me to cope with that and if you do want to consider action sooner rather than later, get a second opinion from another hospital.
If they’re of a similar mind to your current doctor, then you’re still stymied but it doesn’t sound like you have a recommendation to operate at the moment. Quite the opposite.
I think the reason why zapping something deep in the brain is a concern is that I think your more basic functions are located there, so the impact of doing any damage is possibly likely to hit really basic things like movement, possibly eating, breathing etc. The real basics are in the middle there somewhere. Equally, if it’s a long way in, you’re irradiating more of the outer brain to get at the inner brain, so a risk of doing damage to some of your higher functions as well.
You’re not the only person who has a “Don’t operate” or a “Watch and wait” plan. I think you’ll find a number of people in the Cerebellum and Brainstem group and stories in the Cerebellum and Brainstem category where operating is much rarer. It’s a very difficult “category” to be in but you’re not at all alone.
Rams, I will repeat what Richard said, there are quite a few folks here who have the recommendation to watch. It is really difficult to assess risk, the do nothing and keep an eye on it, vs the treatment option. If it is complex to treat, the risk may be greater than watching.
In my case, I had a bleed, and treatment was the decision based on risk of subsequents bleed potential. My decision was SRS ie// Gamma Knife or craniotomy. The risk of gamma for me was the time for success, however that was a lot less in the surgeons opinion than craniotomy due to location.
The fact that made this easy was that I had trust in my neurosurgeon, completely vital to my being at peace with my decision. My suggestion is to ensure your trust, and rely upon his/her expertise. If you have any questions or second thoughts I would seek a second opinion. I think the being at peace with the decision after several very trying months after the bleed, appointments, information overload, Dr. google, was so important to me. Just to get to that point, I was able to relax, accept and move forward, albeit slowly.
Hey Rams. Seems like we could be in a pretty similar position. I have a right-sided cerebellar AVM which docs said is inoperable too. I have known about mine for years as it caused a secondary problem when I was 14. Right then I was told it was too risky to do anything. The thing is deep down, too near major stuff like the optic nerve and on top of that docs here aren’t at all confident of a successful removal especially because it is big. Over the years I’ve had regular MRIs and angiograms. And they have never changed their minds. They did once talk about the possibility of Gamma Knife, but again its risky. So I have chosen to make my peace with it and accept what s. I’m not saying its always easy. I’ve heard people refer to ‘ticking time bombs etc’ and I can’t pretend its fun knowing my life could be cut short. But, the alternative could mean severe deficit, altering who I am and what I have. And I’m happy and contented with my life. As Richard says below only you can make the decision and whatever you choose will be right for you. But I’m proof that some of us actively choose not to treat and that’s fine. Good luck.
Thank you everyone for you suggestions but I have only one question will this avm bleed compulsory or it might be there forever doing nothing to me or giving any health problems
My take on that is that some AVMs never rupture. Apparently sometimes docs do post mortems on the dead and find them. But they never caused any problems while the person was alive. However it does help if you have low blood pressure. And I do.
Yes me too my blood pressure is low for now and I’m 25, donno about the future how my blood pressure fluctuate because I drink and I eat Beatles but left smoking once I came to know about this bomb, but I smile occasionally
That’s great news Rams. Then I would say you’re pretty low-risk really. I’m not a doctor though. I guess if your blood pressure does rise as you get older you can treat then. But at least for now I’d be tempted to monitor and leave it be. You’re still young and it would be such a shame to do anything that could alter your future. For those that rupture of course there is little choice and I also think some people can’t stand the thought of not treating at whatever cost. But its important to bear in mind that you have a choice, you don’t have to treat. It might help to write yourself a list of pros and cons of treating. I think I did this at one point.
I love what Lulu has said. It’s really helpful.
I believe general acceptance is that the risk of a bleed from a brain AVM increases over time, so there’s a greater chance of a bleed in ten years time than there is today and a higher likelihood of a bleed in twenty years time than that. So, while none of us know how long we’ve got (whether we have had an operation or not) it might be the right thing not to plan for a long retirement and leave some of our objectives in life to wait until we are 60 or 70 or 80 but to make sure we achieve the things we really want to do by 60 or by 50 or 40.
While we have a condition like this, we are still subject to all of the other dangers of life: the car we didn’t see approaching, the sharp bend in the road or cancer or other illnesses. I think sometimes we can focus on our AVM and forget that there are other threats out there that could be nearer.
If you need to press on without an intervention, focus on what you want to achieve in life and enjoy it. Don’t let this thing put you off.
Very best wishes,
Thanks so much Richard. Wise words from you as ever! Matches my sentiments exactly
Hello Rams, I am Manoj Patel in New York area. I am 61. My AVM was diagnosed when I was 49. The AVM is in the Brain Stem area and inoperable, but my doctor suggested doing endovascular ONYX embolization. I had 7 shunts so the doc suggested doing embo with 2 procedures. The first procedure went fine without any incident and 2 shunts were blocked. During the second procedure, I suffered a stroke in OR. Luckily, I recovered from the stroke with no defeciencies. The recovery took me physical therapy for 2 years. For the remaining shunts, the doc suggested SRS so, I went with Cyberknife. I faced the same dilemma while making the decision to go with Cyberknife. But, for me there were no other options left. I waited for 2 years to see the effects of Cyberknife, but there was no significant shrinking of the AVM post Cyberknife.My doc had mentioned that with my type of AVM, the risk of bleed increases by 2% annually. I get my annual MRIs done regularly. Two years ago, I started having problems navigating from place to place. I had no headaches but the MRI showed bleed. The doc had no other option left but to attempt embo, which was done with 2 procedures. I am back to perfectly normal with NO defeciencies. Sometimes not having multiple options is helpful in making a decision! I am an engineer so more driven by head than by heart. Let me know if I can be of additional help. My suggestion will be to select a good doctor and follow his advice. Take second opinion if that makes you comfortable. The more opinions you take, the difficult will be your decision making.
Regards, Manoj Patel (Manny)