A healthy food & lifestyle blog specifically catering for & dealing with the symptoms & conditions of : Endometriosis, Polycystic Ovarian Syndrome (PCOS) & Intracranial Hypertension (IH).
Looking at healthy food & food alternatives- redesigning classic recipes & new recipes;
Dealing and living with chronic health conditions on a daily basis- & research about the conditions;
Alternative therapies & remedies, gardening, arts & crafts...
Before undertaking any recipes found on this blog please look to the note in 'Cookery' !

Tuesday, 17 September 2013

What's been going on??? Why the break again??

I am sorry to say that once again I have taken an extended break from Doe-full again...

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.
I'd had enough it was time for a new Neuro and a second opinion!!!!
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.

No comments:

Post a Comment