I have been recently diagnosed with an inoperable AVM with Aneurysm. In June this year, I suffered a clonic tonic seizure. After a CAT scan, was diagnosed with an AVM. After a couple of seizure, had a cerebral angiogram. This confirmed the AVM, but also show a small Aneurysm. I have suffered so many symptoms since, including sight problems, dizziness, memory, walking etc. But have been told the AVM is inoperable, which has left me somewhat at a loss, as to where my life goes now. I have an upcoming appointment with a neurosurgeon about a management plan, but feel like I’m not being told everything.
I am a former fighter and martial arts instructor and trained hard daily. This has hit me quite hard, as I also hard a great family, with whom I like to interact, especially my 3 year old granddaughter. I have so far found information difficult to obtain, which has left me feeling frustrated and my family upset.
any help and advice would be gratefully received.
Hi. Welcome to the site! It’s great you found us.
In terms of the real practicalities, it sounds like that management plan with the neurosurgeon should shed a bit more light on what might be done, what the benefits will be and/or what he or she suggests you don’t do. We are not surrogate doctors, so you need to look to him/her.
However, in terms of it hitting you hard, maybe we can help. Because, to be honest, I think this thing hits us all hard whatever our prospects. It’s absolutely normal to be knocked for six by this sort of thing. So, don’t worry about that in itself. I think familiarity with the situation, taking time to get used to the situation and understanding what can be done / can’t be done will help to settle you.
It sounds, if the AVM is too deep or too extensive or too near to important stuff to do anything about it, that there won’t be much that can be done, though I have read someone recently talking about some medicinal support. I don’t understand what that would be – whether something to lessen (in their case) impact of migraines or seizures or the like – but as you find out what the doc talks to you about, there may be someone you can swap notes with here.
We definitely have people here with an AVM that is inoperable or who have elected to balance the risk of the AVM rupturing against the risks of an operation in favour of leaving it be. We definitely have several people in that sort of space.
What can you do in the meanwhile? I think the main thing is to just let it sink in a bit. If you want to reduce your risk of it bleeding then I was advised to cut out stimulants – smoking, coffee/caffeine, chocolate, alcohol and the like. You might also consider avoiding anything seriously strenuous – no lumping heavy weights around, etc. I found cutting out the coffee and chocolate was great for me. My AVM was operable so I have now had it glued up but in the period between diagnosis and glue, cutting out the naughty stuff really helped take the pressure off. Mine was getting worse quite quickly, so I felt better for only a month or two but if we’re lucky yours isn’t changing too much and being good about things like that might keep you healthy for a long time.
Carry on a bit of normal life. Distract yourself from this. An empty mind is one that thinks about all the negative stuff. So don’t stop life and just inwardly collapse. Try and keep appropriately busy with life as normal.
That’s my line of thinking, anyway.
It’s great to meet you and I hope others will offer thoughts as well.
Very best wishes,
Thanks very much for your reply, reading other stories and hearing from other people, has been a great help. Will keep site posted on how it’s all going. So glad there is support like this to help me.
It’s a pleasure. We all arrive in a similar state of “OMG!” so its good to stand with you and help you get into a better place.
Keep Calm And Carry On
@Mickeboy Hello and welcome
I am so sorry that you have an inoperable AVM with an Aneurysm.
Even some of us who have had treatment are left with parts that are inoperable because they are parts that are too deep or too risky to touch. I have parts they wont touch either .
I feel like I have a bomb in my head, I have learned to live with it. I wanted to take ice skating lessons and learn how to play hockey…but I could tell that made everyone really nervous… I even offered to wear a helmet.
People cant really understand what we go through we look fine most days and its hard to put into words the issues with dizziness memory sleep concentration etc.
I used to work in trading and be able to multiple task and work long hours on 4-5 hours of sleep- Now I cant stand a loud tv or someone slurping their soup I have left restaurants because of the noisy levels.
I am so sorry you had such an active life and had to put it on hold.
Have they offered any medication to help with your dizziness?
Feel free to vent here its safe and I had my freak out here twice before my two angiograms and embolisms.
Massive thanks for your message, you tell about some of the things I suffer. I think how other people see me, is one of the hard things to deal with. I have to wear sunglasses a lot of the time, as I have trouble with light. some people stare, as the sun is not out, I feel like I have to explain all of the time. The other symptoms you explain as well, dizziness, feeling sick, severe headaches. The list goes on. I am still trying to come to terms with everything. All my life I have not been afraid of anything, but have to admit, this has me scared. Thanks so much for your message and support, it is really appreciated…
Hi all I also have an AVM and and aneurysm. My case is asymptomatic for what I know I can not feel anything. If I have and small episode I don’t know about it and as people said is very short in time. After it is over I continue my life normally. I am an English teacher, so I tell all my students and their parents about my condition just in case it happens while I am teaching. I had full support from the parents as well as from my family. The doctors said that my case is unusual and they wont touch me, because of my job. Even the last doctor gave me a letter to prove that I am fit to work as an English teacher. God bless him.