Hi

[lcd8]

Hi there. I'm new here despite suffering from a Brian AVM for about 25 years. Anyone else here suffer from an AVM and Hydrocephalus please?

[lcd8]

Sorry Brain AVM

[StaceM8]

Me neither I'm afraid. Mine was a serious head injury due to a car crash, but just thought I'd say hello & welcome U anyway.

If U are having problems that no-one has encountered on here (which would surprise me as it goes) but there are contact detail on my profile for Headway & I'm sure they'll have the knowledge & experience to help ;o)

[lcd8 in reply to StaceM8]

Thanks so much for your reply. Nice to meet you by the way.

[Matt2584]

Hi ICD8,

I have not had an AVM but I did/do have a brain tumour that has led to a another tumour (cyst). that's right, a second brain tumour. And I have a shunt that has caused me a lot of grief over the years. I have had a lot of operations in my time and the shunt is due to hydrocephalus. My tumour was, and still is, blocking the flow of CSF.

Take care,

MJ

[lcd8]

Thanks so much for getting back to me. So sorry to hear about your second tumour. That is way harsh. I have had my AVM since birth although it is unruptured and hasn't caused me too much trouble (touch wood). It did cause me to suffer from recurrent hydrocephalus though from the age of 12. I had my first Shunt put in at 14 after a long battle to convince my GP I didn't just have migraines. Sounds as if my AVM is in a similar place to your tumour as it restricts draining of CSF too.

[Kady]

Hello. I'm sorry to read about your trouble.

I have had shunt issues as well.

I wish you well. <3

[lcd8 in reply to Kady]

Thanks Kady. Lovely to hear from you. What sort of issues do you have if you don't mind me asking?

[Alan-A in reply to lcd8]

Hi LCD8,

I'm new here and just picked up on your conversation a year ago regarding your AVM. Have you managed to get any help with your concerns? I feel compelled to help anyone who has an AVM... I did have an AVM which was discovered in my right temporal lobe after a head scan due to a seizure in the summer of 2012. My wife and I were in complete shock and were given the option to have it removed either by a craniotomy or a longer less invasive/risky option through lazer surgery. We decided to go for the laser surgery... Unfortunately just a few days before surgery, the AVM ruptured and I unfortunately suffered from a brain haemorrhage. Against all odds I managed to survive and made a near full recovery (apart from epilepsy, fatigue and cognitive challenges) thanks to the efforts from St Georges Hospital and a great deal of good luck thankfully.

Sorry if I've scared you by telling you this but if you haven't already over the past year, I'd strongly recommend you to seek a referal from your GP to see a Neurosurgeon for a consultation about having the AVM removed.

Headway could give you some more guidance and I'm happy to help too if you need some more advice?

Take care.

Alan.

[lcd8 in reply to Alan-A]

Hi Alan. Thanks very much for your message. Yes I still have my AVM and have known about it for 25 years now. Its great to talk to someone here who is familiar with AVM, My AVM is way down in my Cerebellum and is inoperable. I was offered a combination of embolisation (at least 3) and Gamma Knife once but even that is risky since my AVM is large and there is only a 50% chance that it could be obliterated. It has always felt a lot to put myself through and I haven't yet got up the courage to proceed with treatment. With the AVM intact I suffer few deficits and can work, drive etc as if I didn't have one. I have to confess my short-term memory is quite bad though and I'm pretty clumsy (the Cerebellum is responsible for balance). I am under a Neurologist and they call me in for an MRI scan every two years. My last one showed my AVM to be stable, although I do realise it could rupture at any time.

Cheers

Louise

[Alan-A in reply to lcd8]

Hi Louise,

My advice to you would be to make an informed decision a soon as you feel you can and think of the quality of life you would have (if any) if God forbid the AVM was ever to rupture. I know its a hard decision and I was in complete denial myself for a couple of months after finding out. My wife did quite lot of research when we discovered the AVM and found out that the risks of an AVM rupturing is acumulative as life goes on and the older you get, which was why we wanted to go for gamma knife surgery.

For further advice, not only is there me and Headway there is also AVMSURVIVORS.ORG which also has great forums and was really a good surport for my wife before and after my brain haemorrhage.

I'll follow up with a message to your mailbox shortly.

Kind regards,

Alan.

[lcd8 in reply to Alan-A]

Hi Alan.  Many thanks for your email.  Sorry I haven't managed to get back sooner but I haven't been well. In mid-February I had a stroke mimic.  Scans didn''t show any change to my AVM so the cause is unknown although docs think it might have been stress-related.  I'm planning to see my neurologist for a review at some point and will discuss treatment options further then.  I have always been told treatment would be risky for me though due to the size and location of my AVM.  I am already a member of AVM Survivors and agree it is a very useful forum.

Cheers

Louise

[MXman]

Hi Icd8, No haven't had a AVM but welcome. N