Hello dears,
after these days in which I have been asking you questions and reading your stories.
I wanted to write to you that I asked for the opinions of three neurosurgeons + Rene Chapot (the others are not so well known internationally and I don’t think it makes sense to write their names)
And all these top doctors told me that it is not an AVM.
But my symptoms resemble an AVM…
Could it be just anxiety after 6 months in which I struggled to find out what I have?..
I have read so many stories and discussed with so many of you and found out how many possibilities there are, that it is difficult for me to enjoy life anymore because I feel that if I let my guard down, something will happen to me…
My MRI report also says a curvature of the Aica Chavda artery type II on the right side and a cerebellar venous angioma… and my brain tells me that it is an AVM because of these random findings
It really hits my heart when people struggle with the health care world as we know it, wherever we may be. When we add brain to the equation, it gets a whole lot more complicated! I have seen incredible posts of Rene Chaput here, from a lot of folks. There are so many incredible people in our neuro world, but I would pay attention to what Dr. Chaput has to say. If that is not your chosen path, use his opinion as a measuring point. Take Care, John.
What symptoms do you have? Because not everyone is symptomatic.
I know what you’re saying: their conclusion is that you have a DVA and you’re worried that it is more than that.
It’s very difficult to accept answers sometimes, especially when you have unusual goings on in your head. It took me two years to accept that mine was successfully embolized, if I’m honest. I was convinced there were odd noises, odd sensations, that I wasn’t all fixed and that there must be something more going on. However, after a bunch of validating scans I decided I had to accept their expertise and I resolved to put these relatively minor noises and sensations behind me, to take it that I was just being hypervigilant really and believe the doctors; I was ok.
I’m still here, 8 years post op, six years or so after deciding to accept their views and I’m absolutely fine. It was a revolution for me to just go with it and resume normal life.
I think going through these diagnoses is very sensitising for some of us and sometimes it is important to realise that we can get a bit triggered by it all.
I’ve no idea whether you should let go or carry on but four opinions in the same direction is good guidance, one would think.
Lots of love,
Richard
Hello,
Thank you very much for your support, my symptoms are tinnitus, sometimes pulsating, blurred vision (it is not constant), and I have a problem with my right eye, it hurts and I see blurry with it, and sometimes it does not “focus” properly…
My MRA does not show an aneurysm…and after 3 doctors told me that I have nothing to worry about…maybe I really don’t have one?
I have read so many stories and have also seen that a DVA can become arterialized?
Very strange…
I mention that none of the top doctors who deal with vascular problems recommended me to have an angiogram…none of them claimed that I needed any further investigation…
Maybe I have seen so much and empathized so much with the suffering of everyone diagnosed with AVM that my brain has convinced itself that I have something like this too?
I will attach Dr. Rene Chapot’s answer here, please tell me if it seems to you that left room for interpretation of another situation or not
Thank you from the bottom of my heart for all the support offered, for the time given and simply for the understanding offered…
You are a wonderful community.
Tinnitus definitely has more than one cause, even pulsatile tinnitus has more than one possible cause as far as I can tell, so who knows whether there is something driving yours?
In regard to the blurriness of your sight, I had something called a scotoma which occurred after I had had my operations but which we attributed to the contrast material. A scotoma is one of a number of illusions that can occur as part of migraine aura and somehow the irritation of the contrast used during my operation and during my angiogram provoked a few weeks of scintillating scotomas for me. In my case, the scotoma appeared in both eyes simultaneously as a small teardrop-shaped blur, it grew in size over a few minutes to become a C-shape, complete with jagged teeth!! But all the while just a blur: I could still see the colour of whatever was behind it but it was like looking through a frosted glass. Scotomas typically grow in this way and resolve in about 20 minutes. This was how mine were.
So if your blurry vision is like a scotoma, it may be that something is irritating some part of your brain but most commonly it is part of migraine aura and migraine is possibly the most common neurological affliction. In the book I have about migraine, it is described as benign, though that book dates from about 1974, so I don’t know if migraine is still considered wholly benign, but most people cope with migraine, adapt to it, rather than having any kind of operation to try to resolve it. I am convinced that the brain is such a sensitive organ that nobody would plan to operate on the brain with a view to resolving migraine or headaches: no, the brain is too sensitive: there is a much greater chance of making things worse than better. Where we have a stroke risk, it is often worth taking the operation risk to resolve the stroke risk. For anything more minor, you would avoid doing any kind of brain surgery.
We do have people in this forum with a DVA, so you are welcome to be part of this forum. If your condition changes over time and future investigations show something that needs to be done, then that might be relevant to others here and it would be good to share. Equally, it can be more important to put this chapter of life behind you and look forwards rather than back. It is up to you what you’d like to do. I do think we can induce worries etc from going through diagnoses. I know I became rather hypervigilant to the noises and feelings in my head after my operation that it took me a long time to just go back to normal life. I also believe all of the references that people have given to Dr Chapot are of the highest commendation, so I think it is fair to accept his view as of the best standing.
p.s. I’ve removed your personal details from the email image that you included 
Very best wishes
Richard
Hi Richard and thank you so much for taking the time to write this to me.
Thank you also for removing my personal information from the picture, I wasn’t paying attention.
Thank you all for your support.
Hi Amareea,
Sorry to hear you’re still struggling with this. And I know the feeling of “something is definitely wrong and the docs are missing something”… but perhaps reading everyone’s symptoms and because you are having it, it makes you feel that way? Perhaps it’s coming from a place of fear and hyper vigilance, and being vigilant isn’t a bad thing. Only when it starts to affect your daily life.
I agree with Richard. You have 4 medical opinions all saying the same thing, which is great! From the email from Dr Chaput, I gather you don’t have an AVM (thankfully!) but an anomaly which doesn’t pose a risk to you. Perhaps what you’re missing from it (maybe he mentioned, I’m not sure), of whether this anomaly can cause the symptoms you’re having. Perhaps if someone can clarify that the anomaly can cause these sorts of symptoms, you’d feel better, but will still have to find a way to accept there’s nothing further to be done, and to me that’s great!
I have an active AVM which ruptured 12 years ago. I have all the symptoms you mentioned, and again, I agree with Richard about migraines. I’ve had migraines and tension headaches since I’m 15 years old (we didn’t know I had an AVM then), and I get the migraines with and without aura. I had learned what triggered my migraines. Then had to relearn it after my kids were born because thankfully, there weren’t as many triggers. Also bear in mind as females, our hormones do play a part in these things. But in now get micro bleeds. Or such debilitating headaches, I can’t pick my head up. But I have a headache every second of every day. I’ve just learned how to go on with it and when my body tells me I need to deal with my pain, I listen. Perhaps keep a diary (what you ate, what you did, etc.), I know it’s irritating, and then see where in there you come out with a symptom. And perhaps see a neurologist. I can tell the difference between my AVM related headache, migraine and tension headaches, hormonal headaches/migraines and headaches due to low blood pressure. But it took more than a minute to get to this point.
As I write this, I have a micro bleed. I shouldn’t be on my phone, but I’m trying something “new” to see how much I can push myself and the consequences (if any). But I’m happy for you because it seems like it’s not an AVM, but I can tell you from experience, that a migraine can be just as painful, last as long, and sometimes doesn’t make sense that a migraine can wreak such havoc.
I wish you all the best and I’m here to chat or listen any time. Keep aware of what’s happening but don’t let it take over your life. And again, if they haven’t told you if this anomaly can have symptoms, perhaps ask and maybe your mind will be at rest.
Best wishes,
Suraya