The BIG Day
The BIG day came, the day with all the answers, the day that
was going to hopefully change this nightmare we have been living into something
a bit more positive. As you can imagine I didn’t sleep so well the night before
and to make sure we were on time for the appointment we needed to leave quite
early to tackle the London rush hour traffic. So a blurry eyed start for all of
us. Surprisingly we found a parking space in an underground garage, two
minutes’ walk from The National Hospital for Neurology & Neurosurgery,
result!
I will describe in my own words what the consultants have
told me but will attach a copy after of the official report they sent to me a
week later. This is probably best for some, as one, it is three pages long and
will send you to sleep and two, if you struggle with medical jargon and big
words, you may want to grab a copy of Grey’s Anatomy. It makes me laugh really,
knowing I have a condition that has damaged a part of my brain that affects my
eyes and reading and they still use language that baffles the average human
being! Ok I will stop waffling now and get to the point, here goes….
Diagnosis
The appointment was changed to 33 Great Ormond Street, just around
the corner from the National. I remember seeing a sign up on a door at the end
of the corridor saying ” DO NOT ENTER Children on the other side” I then
realised where we were and kept thinking of all those little children that were
ill. I thought of my very dear friend Katrina and her Sister’s boy Finley who
is being treated at GOSH. I remember thinking of a recent photo I had seen of
him with a huge smile on his face and I thought if he can be so strong at that
age so can I. So, with Finley in my mind we were called in.
There were two consultants in the room, I thought I was
seeing Miss Murphy but never mind. Mum and Cat came in too, it was a bit of a
squeeze but we managed. There was an image up on the computer of my MRI scan
showing my funky spaghetti brain. Everybody introduced themselves and they
began. They told me that my AVM was very big, approximately 5cm in size
situated in the occipital lobe and going into the temporal lobe too. The next
statement was the bomb shell “and unfortunately we can’t do anything
about it” BOOM! There it is, a kick to the stomach.
They went on to explain. Usually there are three kinds of
treatments they can do:
1. Surgically remove the AVM from the brain
2.
Embolization- Using a catheter to feed an embolization agent, a glue-like
substance to block the artery and flow of blood into the AVM or
3. Radiation
Treatment – Gamma knife radiation is precise radiation treatment used to
bombard the AVM with radiation so eventually overtime it obliterates the AVM
totally.
Option 1, would prove to be too dangerous and in no doubt result in
leaving me blind in my right eye, loss of speech and possibly cognitive issues.
Option 2, they couldn’t guarantee that by performing the embolization they
could get all of the AVM as mine was so big and complex and if some was missed
the flow could still cause it to erupt.
Option 3, can only be performed on
AVM’s that are considerably smaller.
In short, I am stuck with it, my beautiful but screwed up
spaghetti brain!! Even if I could have had any treatment for my AVM, they told
me my symptoms would still be there. The epileptic seizures, the loss of field
vision, headaches, migraines and attributes of those are here for life, they
may or may not get worse and now we have to just try and manage those. The AVM
still has a chance of rupturing but hey, I have lived 40 years so far with no
problems. It has a 2% chance each year of rupture and I have very little
guidelines to follow in preventing this. That’s 98% it won’t rupture,
not bad odds really but sometimes I wonder as how unlucky was I to have this in
the first place, only 1 percent of the population have an AVM. I should have
done the lottery with all these odds!
As you can imagine this has been a lot for us to take in and
we are still processing it all now. It’s easy for people to say just get on
with your life and forget about it but aside from having what could potentially
be a ticking time bomb in your head, the symptoms are disrupting everyday life.
Having an AVM is an invisible illness even a disability that people that don’t
suffer with long term illnesses may not understand. This is why I am going to
be brutally honest and open in my blog, to show people, my family, friends and
others how having an AVM affects a person’s life. I will document and share all
of my appointments, my rehabilitation sessions. The ups and downs of my
everyday life, work and spare time. I would be very grateful for any input,
ideas and suggestions people may have along the way because if that may help me,
maybe it will help someone else with an AVM too.
I wrote to The Luton & Dunstable Hospital requesting copies of my MRI scan. They were kind enough to send them on a disc to me. So I have put up a few for you to have a look at. You don't need to be a Doctor to see something is wrong. I found it so fascinating being able to look at my own brain, it's very surreal. I love my spaghetti brain!
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The images start from deep in the brain working their way out to the top of the brain.
Even though you see the malformation on the image on the right, it is actually on the left side of the brain
It has now got smaller as it has got to the top/surface of the brain, closer to the skull.
Side MRI's
Also it shows the whole head, how amazing the human body is and how the hell, with such a defect in my brain has this not been picked up before?
The scan starts off on the left side of my head and turns to the right. As it turns you can see the AVM (Arteriovenous Malformation) more.
I also look more like a monkey lol
Below is the official feedback from the consultants
My next appointment is with my neurologist at the L&D to update him and see what his plans for my long term care plan will be. Watch this space, it is coming very soon......
