My name is Jeanette, I am 35 and I am new to this site and a little new to the whole experience.
My journey is only just begging I think. About 6 months ago I have my very first grand mal seizure, I was at work when I felt what I later found out was called a ‘aura’. All I remember is waking up to an ambulance taking me to hospital.
This started my journey.
The following week they sent me to get an eeg, which came back negative. When I saw my nerologest for the first time he just thought it was a once of thing.
About three months later I had another one, by this time they said I just fainted (although I was talking after my fitting I don’t remember anything until I was at the hospital)
I went and saw a gp who said that was not right so he sent me to get a MRI, which was when they found my AVM in my left temporal lobe.
Anyway I fell like I am harping on an I think a lot of you know how the rest goes on since all that my neurosurgeon has suggested that I should not operate because of how close it is to where my speech is and is suggesting GRAMMA Knife, which I will go and chat to a radiologist in march.
Hi Jeanette, John from Canada here! I was diagnosed with an AVM in my left temporal following a haemorrhage in May, and had GAMMA knife in November after a pile of scans tests and consults. Felt it was best given the location within the temporal and possible effect on vision. It was a difficult decision which route to go due to risk of a re-bleed. Lots of folks on here with a variety of experiences that really helped me, so great you’re here. I’m just over 9 weeks post treatment, its actually passing by surprisingly fats and go or an MRI at the one year mark.
Thanks for shearing your story, good luck with your first scan. I think readin things on google etc is the worst for me
However after reading story’s on here and now knowing what could of happened, I am very lucky my only side affect at the moment are seizures that can be managed by medication and just changing a few things in my life.
It’s amazing how quick it all dose fell when you stop and think about it.
It’s a big “change curve” if you’ve ever heard that phrase but you will get through the shock of all this. Time is a great healer, I think.
I Googled stuff last year and took myself to the doctor in April when I decided I had pulsatile tinnitus and therefore probably an AVM. It took until August to see an Ear, Nose & Throat consultant and he confirmed a bruit and probably an AVM. I joined this site a month later, as I was going for my first MRI. Reading some of the stories on this site is enough to frighten anyone but for as many really difficult stories, there are others with good or really good outcomes.
Once I was seen by an interventional radiologist in November, I’ve found it much easier to settle into life again. Having an appointment to aim for helps me, too. On the occasions when you’re waiting for what might happen next (i.e. when waiting for appointments to come through) is more difficult to settle.
So, hang in there. The initial shock is big, the ride can be quite bumpy but it can have good outcomes.
Hi Jen
Its always good to read up and learn as much as possible and I agree google can ve scary so I’ve started reading published journal articles instead that summarise the state of practice. I find them very informative and helpful to know what to ask the drs. Seeing a few drs is also helpful to learn more and get different points of view, so don’t be shy about getting second opinions.
Cheers
Janet
I did stop looking at google and started looking at peer reviewed papers and still scared me a bit lol.
However I have thought about a second opinion but I thought about waiting till I speak to the radiolologist first and see what they say. Thanks to this site and reading up on the papers, I have been able to write a bunch of questions
I am from Melbourne, I was diagnosed with an AVM on my side of my brain , which was too dangerous to be operated. I was treated with GAMMA KNIFE at Macquarie Neurosurgery -Macquarie University hospital, Sydney . Dr. John fuller. I went through 2 sessions and being followed up with MRI every 6 months.He is happy that it is reducing. i am on medication for seizures. It is over whelming, please feel free ask any questions if you need as I have done much for the past three years & learnt live with it.
Take care Anush
My AVM is also inoperable and mine is on the right temporal lobe instead of the left. I have had cyberknife radiation done instead of gamma knife. It has been 8 months since I had the radiation.
Hi Anush,
I am in the process of booking gammaknife at Macquarie with john fuller aswell. I was wondering if you could private message me (not too sure how to do it on heee) as I have a few questions that I would like to ask.
Hi Jean I too was diagnosed with avm in left medial temporal lobe with only presenting symptoms of severe headache day and night.done done with cyberknife this June.and now I am going through severe constant headache and depression .
since all that my neurosurgeon has suggested that I should not operate because of how close it is to where my speech is and is suggesting GRAMMA Knife, which I will go and chat to a radiologist in march.