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AVM Survivors Network

New here... very anxious

Hello.
I am very new here. I got a letter following an MRI saying they had discovered an arteriovenous malformation on my right frontal lobe. I had no idea what any of this meant and had no one to tell me anything about it, so Ive been searching the internet for information. I have been referred to a Neurosurgeon at a specialist clinic at a different hospital. No idea what’s going on really.

Other than the seizures (2 in 2 months with no history) and ongoing depression + regular headaches, Im not sure how much of me is my AVM and how much is just me.

Im very clueless Don’t know what I’m looking for or what’s ahead.

Hello all.

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Welcome to our site, and you’ve come to a great community of AVM’ers and support people. Most of us no nothing of AVMs when we get diagnosed, and most have never heard of one. You’ll get a wide range of experiences here and will learn a lot. I discovered mine when it ruptured in May 2016, and then had Gamma Knife in November 2016. I was fortunate to have mostly recovered from the bleed. Finding a brain AVM without a bleed is good and options can be explored. There is a wide range and in many cases the best course is to monitor. You’ll likely be inundated with info, be ready for your appointments with questions and use Dr. Google but recognize it is often skewed to the negative! I have fund that the saying “Bad news travels faster than good news” is certainly the case in researching anything to do with medical stuff!

You will see a number of folks from the UK on here with tremendous experience and insight with the medical system there. When is your appointment? Take Care, John.

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I never heard of an AVM before my rupture. A lot of good people and advice and experiences on this forum so don’t be afraid to ask questions.
hang in there, breathe and take it day by day.

Teach, please keep in mind that a little knowledge is very dangerous things. Be careful what you read and take to heart via the internet.

Start a list of questions to ask the neuro and asked for clarification from people here before your appointment – don’t freak yourself out with internet information and “what ifs.”

The people here are fantastic, I’m glad you found this community!

azurelle

Thank you all.
I have learned that there is evidence of a previous bleed, unsure when.
What sort of symptoms have people experienced?

Teach

Hi,
We’ve all got different sized AVMs in different locations within our brain so despite having similar symptoms in many cases, we won’t have identical experiences. Also the location that the AVM drains into matters. Please bear that in mind when reading other’s stories as we are all quite unique really. I was able to get a copy of my initial MRI scan report whilst I was waiting to see the neurosurgeon and this was very informative as to the particulars of my AVM.
One thing that does seem to be quite common is that after an MRI diagnosis the neurosurgeon sends you for a cerebral angiogram.
You are at the beginning of your AVM journey and it is a marathon, not a sprint, so just take it one step at a time. We will all be here to support you along the way!

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Hello Teach 1991. I can say that you have got some luck with you for surviving a bleed. I had my AVM bleed at age 10 back in 2000. I can say you talk about a headache. The doctors did emergency surgery and stoped the bleeding but after that was in the hospital for almost 3 months. They did a lot of MRI scans and crazy EEG scans to figure out when and how to do the surgeries to remove the blood clot from my bleed. The bleed had caused swelling in my brain so I had to wait for the swelling to go down. Your doctors probably also are going to do some of this to. Patients is one thing that I’ll admit is very aggravating but the doctors are doing there best to help you. If any questions just ask.

Welcome Teach, Thanks for being courageous enough to be brutally honest with yourself and us. I appreciate how difficult that is because I’ve struggled with honesty for about 45 years. (I’m 59.) I had my AVM (left frontal), bleed, 2 craniotomies, and grand mal siezures since then, at age 14. I had to go on anti-depressants for quite a while but they really decreased my quality of life. I was prescribed anti-psychotics by a misguided psychiatrist and I lost a year of my life–a zombie with no memory. (Don’t trust everyone with a fancy degree.)
Your uncertainty and confusion seem really rough to handle. It was hard for me too and I remember breaking down in tears when I was told I’d needed a second brain surgery. At the same time it is amazing what we human beings can overcome and accomplish. We are amazing creatures!! (intentionally avoiding religious assumptions)
It is my feeling that you are an especially amazing one among us incredible humans. I’m happy to be here for you and if you ever want to unload some negative crap on me, feel free, I’ve probably been there myself. In your corner, in this championship bout, Greg

Hats off to you Aliveandkicking, You are one tough dude and I’d be proud to meet you in the mountains. But seriously…I would have never thought to get a copy of my test results. Duh!! how naive and accepting we are when it comes to doctors.(at least in the U.S.) I’m a lawyer (retired) but I know that the patient literally owns their records and it makes absolute sense to get a copy. (Doctors have been known to make mistakes.) Thanks for that reminder, Greg

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Hey Teach,
Glad you found us. There are some very knowledgeable members here, with some excellent first hand experiences. This is never an easy route for anybody and I can assure you, you are not the first and you will not be the last who has no idea of what this all means, but the membership here is always willing to offer whatever support is possible.
Searching the internet for answers is fraught with dangers as every story is different, so trying to draw parallels between an individuals story and your own situation can lead us down a dirty great big rabbit hole. Some stories really can be ‘worst case scenarios’ and drawing parallels with these can really do our mental health a world of harm.
As difficult as it can be (I know it was for me) waiting until you get some more information from the neurosurgeon regarding the location, the size of the AVM and their recommendations for treatment can often be best. All of these things can have an impact on what’s ahead. Our minds can easily take us down the ‘worst case scenarios’ much quicker than is necessary. Don’t go there, not yet anyway. Take things step by step, that is, see the neuro, get the info, then move on from there.

Merl from the Moderator Support Team

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Thank you everyone for your messages.
I think I’m doing remarkably well considering. I don’t have anything severe. I finished my teaching qualification in July, worked temp work over the summer (when I had the worst headache in my life) and I started my first teaching role and moved house in the same week (never doing that again!!!). So I’m struggling to comprehend what is normal brain fuzz because I’ve had alot going on. So glad to have found a support network.
Im a little paranoid everytime I get a headache now… is this normal?

Yeah. Completely! Best to treat it like any other headache and only panic if it turns out bad, I think. By far the best thing to stay calm and keep the old blood pressure on an even keel.

It’s great you found us and it’s good to be able to support each other.

Very best wishes for Christmas and the year ahead,

Richard

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“Im a little paranoid everytime I get a headache now… is this normal?”

VERY normal !!! When we don’t have a diagnosis it seems easier just to write it all off as a simple headache, even a very bad headache. But having a diagnosis we know there is an issue and often question “Is this a sign of progression?”.
What is normal? Well, when you find that answer please tell me. Many of us have been managing debilitating head pain for many years. For myself it seems that this has become my ‘new normal’. It is FAR from nice and far from my former ‘normal’ but this is now the reality I try to manage. I believe the best way to look at it all is "Be aware, not alarmed’. I find that if there is a progression of symptoms getting worse, then I must act, seeking medical attention. But otherwise, it’s just a ‘normal’ headache.

Merl from the Moderator Support Team

Hello all. Merry Christmas.
I was worried about driving - has anyone been unable to claim their license?

Merry Christmas!

You’ll need to get clear of the seizures. That’s the thing that will mostly block driving. I can’t say whether having an op will completely rid you of the seizures. You’ll need to discuss that with your neuro but the objective of any op will be to reduce or remove the risk of a stroke. Fixing that might stop the other effects that your AVM is having but it might not stop all of them.

Lots of people are able to go back to driving but there is a good proportion who don’t, for various reasons.

Anyway, now is not the time to worry about that. There’s a long way to go yet. Find out what your options are and go from there.

Very best wishes for the year ahead,

Richard

Assuming you already have a UK driving licence, you need to report your medical condition to the DVLA
https://www.gov.uk/arteriovenous-malformation-and-driving
For the US and Canada the laws vary between provinces and states.

About a year ago, I was diagnosed with an unruptured brain aneurysm as well as an arteriovenous malformation. I completely understand your concern and panic that you feel. Those days prior to seeing a neurosurgeon are ones that I hope to never live again. So many possibilities go through your mind. Both of my issues required a total of 12 hours of neurosurgery. I have to say it was a bit strange going into such a major surgery especially when I felt completely fine. I was able to go back to work in 8 weeks, and am feeling very well. So thankful for my skilled surgeon Dr. Rose Du. She was outstanding. With her thorough explanations, I was able to understand that an AVM is when certain arteries and veins get tangled which causes more pressure to be on a vein(s). This puts them at greater risk for bleeding. All situations are unique. I hope that your surgeon will make you feel that you are in their skilled/compassionate care. Continue to post here so you don’t feel alone. Good luck.

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