I was diagnosed with my AVM 10 years ago, and the decision was made by my doctor to monitor only. Last month I started having headaches - not migraines- and last week I started becoming incredibly dizzy, tingly in my arms and legs, and emotionally unstable. My recent MRI shows the AVM is stable. Does anyone have similar experience? What was the cause- was it AVM related? Did you decide to treat? TIA
My AVM was found 25 years ago, at that time they didn’t really know how to treat them that’s what this family dr. Said, so I never worried about it, not until my ears started ringing so bad I felt like I was underwater after awhile, I am 55 now, and to a neurologist and he sent me to the surgeon, he is going to just watch it, dr. Said if he went in there is a very big percent that I would have to learn everything all over again, it is deep in the fight frontal of my brain, yes I get tingly hands and feet not legs, and I have bad headaches, I hope this kind of helped you if not just ask me in a different way, LOL!!
The dizziness is unbearable, and yes the ringing in my ears too. The doctor is saying that these symptoms are independent of the AVM. I’m curious if others have been told the same?
Also, what are you doing for symptom management?
Hi there JoJo,
First of all welcome to our community
Could you let us know where your AVM is located and how large it is? This could help us have a better understanding of your case and also help people who also have an AVM in the same area find your post in order to respond.
The symptoms that led to my diagnosis included: visual aura like episodes, migraines, fatigue, drowzyness that was getting worse over time. This was due to my AVM slowly causing brain damage over the years and potentially having grown or increased blood flow to it.
It is very good that you have had your AVM checked and that it is stable. I would suggest seeing a neurologist and also requesting to see another neuro-surgeon? It could be your AVM or another issue, regardless it should be looked into.
The first neurosurgeon was almost certain that there was no correlation between my symptoms and my AVM. However I went to another hospital and they confirmed my belief that it was all related to the AVM.
Please let us know how you get on!
My situation is not AVM related, but it is a brain issue. I had surgery for a nasty growing within my skull and was told “all fixed” it was not. I started having all sorts of what I call ‘sensations’. Tingling, dizzies, heart palpitations and of course headaches. The initial surgeon was VERY arrogant “… I operated and I fixed, so its all FIXED”. And as for the headaches “Well, what do you expect, I’ve operated on your brain. Of course you’re going to have headaches” treating me like an idiot. But these weren’t just common old headaches, these were full blown nauseating, rip my damn head off, explosions of pain. So I went and got a 2nd opinion. It turned out that the location of the growth was an issue and there was a risk that further surgery could lead to me becoming blind. I was not told this by the initial surgeon and it may have explained his reluctance to operate again. But still I couldn’t live like that and the 2nd surgeon agreed to operate again.
I would recommend you get a 2nd opinion from an independent dr. I say ‘independent’ because some associates of your former surgeon may simply refer to the former surgeon’s recommendation, where having a truly independent assessment will get you a truly independent opinion. Sure, the response may be the same but at least you’ll know that there is little interference from the former surgeon.
But, over all, I totally agree with Corrine “…It could be your AVM or another issue, regardless it should be looked into.”
Merl from the Moderator Support Team
At the time of my diagnosis, the neurologist didn’t tell me much. Because I was so young, and he brushed it off easily - I never did any research into AVM’s. I wasn’t told where it was located or how big it was. I was given medication for migraines, and told not to bare down (as in child birth). The medication made me feel like crap, so i didnt take it.
I just got finished with my appointment. Doc told me I actually have two small AVM’s in the right frontal lobe. They didn’t show actual measurements in the chart notes.
I’m in a similar place. I’ve only had dizziness since having worthwhile symptoms from my AVM. Having my embolization has allegedly fixed the AVM but left me with some weird feelings in the head, louder tinnitus and some balance concerns, so I definitely think yours are AVM related. In fact, I’d say get a second opinion if you can.
I’m glad you atleast have a little more information now! I suggest checking this page out to help with coming up with a list of questions for when you next see a specialist to get more information:
I suggest joining the frontal lobe group: https://www.avmsurvivors.org/groups/BrainFrontal/members so that when people check out your post they will know your talking about a frontal lobe AVM.
Since it was 10 years ago since you got your diagnosis, understanding of AVMs and treatment technique+technology has developed alot since then. My Neuro-radiologist said the technology he used to treat me would not have been available a few years ago! So there may well be a differant opinion on potential treatment options than you got when you were diagnosed.
My AVM was on my cerebellum, so it was far removed from your location. I did not know that I had an AVM until it burst. I had not even heard the term. There were some red flags for up to year before the event, maybe over a year. I was not myself, and from what my wife says, it sounds like I was a zombie. I remember being very sad and emotional, depressed, and my memory was bad. In fact, the closer it got to the burst, the worse my memory of those days. Oddly enough, I remember the actual burst very well, which always seemed odd to me. My wife says that I walked very slowly. I do remember the despair.
Anyway, I’ve always been puzzled as to what was causing those symptoms so far in advance of the event. What there a tiny amount of bleeding, or was it the “mass effect” of the growing nidus? I don’t think AVMs “leak” without bursting, but the more knowledgeable of you, out there, might know. My doctors were puzzled when I described what happened to me before the burst, and just shrugged (figuratively). But, yes, AVMs can have effects before the burst. I’m not sure if an MRI can definitively say an AVM is stable–how can it tell how weak the surface of the AVM is getting? Are they saying, “stable”, in the sense that it is not currently bleeding? This situation bears watching on your part, and I recommend being assertive with your doctors and ask all the challenging questions you may have. Heck, it might be a good idea to get a second opinion. Best wishes! We are all here to offer support.
Oh wow! I read your comment to my husband and he nodded and said yes! I went to neurologist yesterday and he said something incredibly silly (imo). He said that because my AVM’s haven’t bled yet, he isn’t worried that they will…?
Sending me to a vascular neurologist in two weeks. I’m starting to think I’m crazy.
I think they meant that it hadn’t bled or grown when they said ‘stable’. I am going in for another MRI, this time to check for aneurysms… also more tests to check for PCC - tumor in the adrenal glands. This process is painfully slow