Monday, 27 July 2015

Long time no see!

I must admit to having neglected my blog in recent months. Why? Well downright laziness may play a part, but there is the time factor .... juggling daily living, family and bowling with Facebook pages and this blog. Somehow this little journal gets left until last .....

My Facebook pages include one designed for meningioma sufferers but I do include stuff for those suffering from other types of brain tumour as well.  It appears to be going quite well and I like to think that it is of use to people.

Meanwhile Feckit and Fuss seem to be reasonably behaved and apart from trouble with my vision (which could be totally unrelated) I am managing pretty well on minimum doses of Amitriptyline and Carbamazepine. These help me get to sleep and also reduce the incidence and ferocity of facial pain. So things are good on that score!

Also good is the fact that my bowling partner and I won our club pairs championship which gave us entry into the Dunedin Champion of Champion Ladies Pairs Championship which we managed to win!

Then May/June we went to France for a month to visit our very dear French friends in Bordeaux and included a week's boating in a narrow boat on the Canal du Midi and 10 days stay at the Lac du Lacanau. It was all fantastic!

Please visit my Facebook page at:

Meningioma Living

Au revoir et a bientot!

Monday, 30 March 2015

'A new reality'

Where is she,

the me I used to be?

Fading, shredding, wafting free

in ragged pieces, desperately

spinning, shrinking, hard to see.

Pretending, as things become less clear,

that nothing's wrong,

I am still here?

Wednesday, 4 March 2015

Not a pain in the neck but a pain in the tooth!

Golly it has started again .... that awful pain in my left lower back molar!! And I really thought that those episodes of lancing pain from trigeminal neuralgia (TN) were under control with the 200mg Carbamazepine at night. But no! Those little jabbing pains in my left ear suddenly started to get worse then the brutal stabs in the tooth started.

I was pretty sure it wasn't actually my tooth that was the problem, as I have not long had my annual dental check-up, so I increased the carbamazepine to twice a day ........ and VOILA! It took a day to abate but things are now much much better with only the slightest twinge when I talk too much!

What are the symptoms associated with Trigeminal Neuralgia?

  • Pains are brief, lasting from seconds to a couple of minutes. Attacks of repeated brief bursts of severe pain may occur and last for an hour or more.
  • Pains are usually shooting, stabbing, sharp and electric-like.
  • Pains are usually triggered by light touch such as talking, eating or brushing the teeth.
  • Pains are located in the face, usually in the cheek, lips, jaw, palate, tongue, teeth, gums, side of the nose and, less often, about the eye and forehead.
  • Pain is usually on one side of the face, although infrequently, similar pains may develop at some other time on the other side of the face.
  • Pains usually respond, at least initially, to carbamazepine (Tegretol) or oxcarbazepine (Trileptal).

How do you distinguish tooth pain from that of trigeminal neuralgia (TN)?
Dental pain is usually provoked by direct percussion to a tooth or application of cold and is diagnosed by examination of the teeth and peridental structures. Trigeminal neuralgia is often triggered by light touch about the face and may be provoked by wind, shaving, talking, eating or brushing the teeth. Carbamazepine (Tegretol) or oxcarbazepine (Trileptal) will eliminate the pain of TN but not dental pain. The relief of TN pain from carbamazepine or oxcarbazepine is usually very rapid and may occur within 45 to 60 minutes.

It may seem a strange thing but there is a definitely a link between petro-clival tumors and trigeminal neuralgia, and it has been something of a relief for me to find this out I can tell you. It is always good to know that one is not being hysterical or a wimp!

Wednesday, 18 February 2015

Over-done or done-over!

Well I've seen the radiology-oncologist (RO) and also 'conversed' via telephone and text after a 'team meeting'.  The upshot of it all is that the measurements are STABLE (a good thing) and this whole exercise merely seems to prove how very hit or miss (even meaningless?) these measurements are (a bad thing) !!

RO said over the phone that the chief radiologist had 'looked back' and reviewed the films and that Fuss was currently 12mm and had not changed. However, having been told that it was 9mm in 2012, and at that point reportedly had not changed since seen on film in 2009,  I wondered which particular years had actually been reviewed.

Text messages followed:

Me:  Sorry to be a pain but it was the 2009 film?

RO:  No I think 2010.

Me:  First actual report 2012 but was on 2009 film. That is why I wanted to clarify.

RO:  We looked at the films. In any case no real change. It's good news.

RO is now definitely a bit huffy that I should continue to wonder why there should be a 3mm difference between the 2009/2012 measurement and the 2014/2015 measurement.

But "no real change" and "it's good news" ........ IN OTHER WORDS SHUT UP.

Wednesday, 4 February 2015

Not quite so done and dusted as I had thought ......

It seems from the MRI result that Fuss may have grown 3 or 4 millimetres since January 2013, according to my radio-oncologist. However, she does not seem concerned about it so this measurement may be of no significance ..............,

Wednesday, 21 January 2015

MRI ... all done and dusted for another year!

Feckit (2.4 cm)

Fuss (1.28 cm)

Had my annual check MRI on January 6th, but did not get the results until yesterday as my consultant was away on vacation. Those two weeks of waiting seemed like an eternity!

I was beginning to worry that feeling bad lately meant BIG things were happening in there and that Feckit and Fuss were having a fight!!!! Anyway, there is no real change so that is GOOD NEWS, even though Fuss seems to be growing at around 1mm per year! This is about the average growth rate for a non-malignant meningioma.

I have been told that I will have another check MRI next January .... no trying to fob me off with bi-annual ones this time! Good news all round then?