There has been a lot going on
behind the seems; some great things, some crappy things and some sad things;
and to be honest I haven't really been coping with it all very well.
I have felt the break
tremendously, as I always do, as sometimes I wish I could just jump on and say
what is going on without thinking about how I write or how things may come
across, if I did... well let's just say some might be a little worried by
my tumultuous and erratic posting.
And on the food front things had
to slow down too as I wasn't able to get in the kitchen as much as a liked- but
I am getting back in there now!!!
I wouldn't be surprised if you
were now a little confused and maybe a tad bit worried by my above ramblings.
So I shall enlighten you as to
what has been going on...
Let's start with my head as that
is the centre of all things lately and well it's the body's control panel:
Since the end of May, and before
really, my IH and headaches have been a constant issue.
The last health post stated that
my head was all over the place and to be honest it hasn't changed much at all!
M. and I were having issues with
my Neuro and were getting fed up with his lack of action or any plan
whatsoever.
Dr P. had been my Neuro since May
2012, after my stenting procedure. And during the course of my treatment under
his care he hasn't actually done anything that has improved my health at all-
it stagnated.
Yes he put me on meds, then took
me off them again then put me back on them again, he did a few run of
the mill tests that confirmed that yep I have IH- but we already knew that!!
He did a lot of talking about
possible treatment options or tests we could try or sending me off for a second
opinion...
We did none of the tests or other
treatments. He did contact another senior Neuro but did not give him my actual
medical notes.
So I reached out the support
forum for IH Australia on FB asking for Dr's names, info and locations. I then
conferred with my GP and we decided to try our luck with one of Sydney's
leading Neurologists and a Prof. of Neuro- Dr O.
He responded quickly and was
happy to meet with M. and I and discuss my case, within 2 months of first
contact I had an appt with him.
I felt like I had for the first
time finally met a Neuro that actually understands my health condition and is
up to date with current research, technology, testing, treatments, and actually
'get's it' from the patient perspective!!
He was very straight forward and
honest about my treatment- the only step forward at this point in time is to do
Intracranial Pressure Monitoring for 24-48 hrs.
He said there was no point doing
further LP's, cerebral venograms and manometry, and no way he would consider
doing another stent- all because it hasn't worked so far why would it work now-
which I completely agree with!!
This is quite funny because this
is pretty much the exact opposite that Dr P. was suggesting.
Dr P. wanted to do another
venogram and manomety and look at stenting the left transverse sinus ventricle
(the right was done in May 12').
He said he conversed with the
senior Neuro and they decided that I would not be a candidate for ICP
monitoring... haha yeah!! I am starting to think he was just a crock of
bull*$@!
ANYWAY!! so YAY new Neuro and
second opinion- it's freaking fantastic news.
And I have decided to go through
with the ICP monitoring, but I want to wait till we have cleared up what is
going on with the rest of my body- hooray chronic dehydration, night sweats,
and hot flushes... probably not a great idea to have that going on while I have
an open hole in my skull!!
But the biggest pro about the
procedure would be that we would FINALLY get a clear and accurate reading of
what my ICP readings are like and if there are indeed fluctuating as much as we
think they are.
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