Monday, 19 December 2016

And the good news.....?

I had my annual review yesterday and saw the neurologist who I met for the first time last year. It is just over 7 years since diagnosis of these two skull base M's, one of which was zapped with fractionated stereotactic radiation.
My main symptoms have remained the same since treatment and for the past few months I have been feeling pretty rough. Yesterday the N said that that I am showing the beginnings of Parkinson's Disease ... some muscle rigidity in right arm and leg, and balance difficulties, which probably explains the several falls I have had in the past year or so. There is also the double vision but we didn't get to discuss the possible cause of that.

I asked if it could be caused by the M's and/or the radiation treatment and he said NO.

I asked him about my memory issues - difficulties with words, lost memory of past events, etc,, and he told me that he is involved with an ongoing study covering the effects to memory of Parkinson's disease. He asked if I would be interested in taking part and I said that I would.
My annual MRI is due in the New Year. It is a pity that this appointment with the neurologist hadn't been scheduled for AFTER the MRI.  We would at least have known if there had been any changes since January last year.

Feeling a bit down over all this but they say whatever doesn't kill you makes you stronger. 
I just hope that's true!

Sunday, 23 October 2016

The Way Things Are - another poem

The way things are

There comes a time
This much I know
When a mind feels like resting
And I ain't suggesting
That this is wrong
- just my way of protesting
The way things are

Things don't last long
This much I know
And my mind keeps on saying
Stop your crying and praying
Don't make no sound
- just my way of delaying
The way things are

There is a way
This much I know
Be it standing and staring
Be it doing and daring
You'll take my hand
- you'll be smiling and sharing
The way things are

Thursday, 1 September 2016

Spring is just round the corner

Yesterday was officially the first day of spring and I notice that we were only just tipping into winter when I last posted. Shame on me!

We had a great four weeks away on Australia's Sunshine Coast while the weather was at its coldest here at home, mid-June to mid-July ....and it was nice to not need a coat! We played quite a bit of bowls and made some new friends. Hopefully we will go back and visit there again one day soon.

Well there isn't, and hasn't been, much else to post about on the Meningioma side of things. Everything is still the same old, same old. But the jerky movements in my legs are now a thing of the past since I have stopped the regular doses of Carbamazepine (Tegretol). I still take the occasional dose if the dreaded Trigeminal Neuralgia starts twanging away though!

I managed a couple of paintings over the winter months and surprised myself. I need a bomb behind me to get going though! I am really pissed off with feeling tired and not sleeping properly. Its very draining. From what I read on the meningioma and brain tumour forums and websites it is quite common for people to wake up about 3am with headache and nausea!! And the majority report that, like mine, their doctors tell them it is nothing to do with the tumour, or that they have no explanation for it. But we can't all be imagining it! Doctors really don't seem to get it.

It is amazing how similar a lot of our symptoms and issues are whether waiting for treatment, post-surgery or post-radiation.... and there is some comfort to be had in that. And it is wonderful that the Internet enables people to exchange experiences and information, and  offer support to each other.

Worry Beads
Constant tinnitus, headache/nausea, tachycardia in the middle of the night, double vision, poor memory. But pains on the left side of face are fairly well controlled with Amitriptyline taken before bed so that's something. I do worry whether or not one of the little buggers is growing ........

Wednesday, 25 May 2016

Just don't know what to do with myself!

Here in New Zealand we are tipping into winter, and the weather has been markedly colder and wetter this past week. But the countryside and gardens are all the better for it, having been parched dry by a very warm, and long, dry spell. So like all things any run of bad or good conditions comes to an end eventually.

I used to believe that about my symptoms but have yet to be proved correct. After 7 years they still keep rolling along, just like Ole Man River! The double vision occurs dozens of times a day now and takes anything up to 2 minutes to resolve. I can drive ok when it happens but have to close my right eye otherwise I can see two separate roads ahead which is somewhat scarey to say the least!

Seems that I am also duller and more sleepy these days ... my head is just too achy and tired to bother with much of anything. Even reading, which has always been almost an addiction, is slowly losing its appeal ... I just can't be bothered. Likewise this blog. And my art. All too much trouble.

What to do about it? If it wasn't for friends and family ..........

Still at least I am looking OK ... or so everyone keeps telling me, LOL !! But then, they can't see my brain being squeezed, can they?

Thursday, 25 February 2016

Mine's a double!

Visited doctor on Monday ... tested my eye movements and confirmed binocular double vision, most likely caused by the smaller meningioma (Fuss) which is sitting centrally, on or near the Crista Galli, close to the oculomotor branch of the optic nerve.

For now it's wait and see time. These episodes of double vision occur after I have looked to the right or left horizontally and then return my gaze to look straight ahead. If they get worse it may be necessary to consider surgery or radiation (not a comforting thought).

Friday, 19 February 2016

In the wink of an eye!

I received my annual MRI result at the end of January and it seems that nothing much has changed in a year, although Fuss seems to have increased in size by about 1mm and is now 12mm in circumference, according to the report. I contacted my radiation-oncologist and suggested that perhaps there was no need for her to see me and she agreed, but she will arrange for a further MRI in a year's time as usual.

I did receive an appointment with a new neurologist prior to the MRI. This went OK and he suggested a check of my blood and a review in one year. So THAT is THAT for another 12 months! I did tell him about the jerky limb movements that have developed (ataxia) in the past year and also the double vision, but of course neither happened while I was at the appointment! Sod's law, isn't it?

With regard to the ataxia I have since found out that this can be a side effect of the drug Carbamazepine (Tegretol). I have been on the drug more or less continuously for the past 3 years following severe Trigeminal Neuralgia affecting the left side of my face. Carbamazepine has been shown to be extremely effective in controlling the spasms of TN. Anyway, I decided to slowly wean myself off over 3 weeks or so just in case this was the cause of my problem and, much to my DELIGHT, those jerky leg and arm movements have STOPPED! What a relief!


However, the double-vision (diplopia) remains a nuisance and I intend to see my family doctor about it next week. It seems it might be "binocular double vision" because if I close or cover one eye when it occurs the image is no longer 'double'. I do wonder if Fuss is causing this as he's sitting close to the oculomotor nerve which is responsible for movement of the eyes and eye-lids. It seems possible.

What worries me is that, if the double vision cannot be cured and continues to get worse, it may mean I am no longer able to drive. Meanwhile, if you see a senior citizen driving along with one eye shut you will know its me .... and I'm definitely not winking!

Causes of double vision 
Double vision can occur in one or both eyes, and can be caused by several different conditions.

Double vision in one eye (monocular)

Double vision in one eye is known as monocular double vision. Double vision continues when the unaffected eye is covered, but you should be able to see normally when the affected eye is covered.
It can be caused by:
  • an irregularly shaped cornea (astigmatism), which is a refractive error
  • dry eye, which is when your eye does not produce enough tears
  • abnormalities of the cornea
  • abnormalities of the lens, such as cataracts (cloudy patches over the lens)
  • abnormalities of the retina, such as macular degeneration
The cornea is located at the front of the eye and acts like a camera lens, helping to focus the light coming into the eye.
The retina is a light-sensitive layer of tissue at the back of the eye that converts light entering the eye into electrical signals.
Monocular double vision is rare. Astigmatism and cataracts are the most common causes.

Double vision in both eyes

Double vision caused by both eyes failing to work together properly is known as binocular double vision. If you have binocular double vision, your vision will usually be normal if either eye is covered.
If you have binocular double vision, your eyes will point at slightly different angles, causing them to send different images to your brain. The images from each eye are too different for your brain to create a clear, single image. This results in you seeing double images.

Conditions that can cause double vision

In adults, if double vision develops suddenly and isn't caused by a childhood squint, it may be a sign of another condition affecting the free movement of the eye, or the muscles, nerves, or brain. Conditions may include:
  • a thyroid condition affecting the external eye muscles – your thyroid gland is found in your neck and produces the hormone thyroxine 
  • a condition affecting the blood vessels supplying blood to the brain, or to the nerves controlling the eye muscles (for example, a strokeor a transient ischaemic attack)
  • diabetes – which can damage the blood vessels supplying blood to the nerves of the eye muscles
  • myasthenia gravis – which causes the body's muscles to become weak, including the eye muscles 
  • multiple sclerosis – which affects the central nervous system, including the nerves of the eye muscles
  • an aneurysm – a bulge in a blood vessel caused by a weakness in the blood vessel wall, which can press on a nerve of the eye muscle
  • brain tumour or cancer behind the eye that prevents free movement or damages the nerves to the eye muscles
  • head injury damaging the brain or the nerves that move the eye muscles, or damages the eye socket and restricts the movement of the eye muscles

Friday, 15 January 2016

This waiting game!

So I had my annual MRI on Wednesday. Of course, they tell you nothing, zero, zilch on the day ... not even the tiniest clue as to how things are going in this nut of mine! But then, I didn't really expect them to if I am honest.

But sadly my radiology-oncologist is on annual leave until 25th so I am very unlikely to hear anything until at least 27th/28th.  People keep saying "Oh, that's not long to wait!" (which to my way of thinking is on a par with "At least it's not cancer") ....

Little do they know.

It may not seem long to them but it seems like AGES to me!! Especially when a whole year has gone by since the last test results.