Sunday, 29 March 2009

Worry beads ......

What a strange situation! .... here I am looking, sounding and behaving exactly as I usually do (well, mostly) and yet I'm harbouring this little stranger! It's almost like being newly pregnant - who to tell and when? Will everything be all right? Plus the realisation that life will never be quite the same again.

Telling people

Who to tell is actually quite a difficult one. Of course it goes without saying that John and the children were the first to know, plus a very small circle of friends locally who knew I had been sent for a CT scan. Next we've told friends and relations in other parts of New Zealand and UK. But what to do about the 'wider circle' of friends and neighbours? I haven't managed to grapple with that one yet. When people I meet casually greet me with "Hallo, how are you?" they don't really expect, nor want, to hear "Not so good .... got this brain tumour."

It's just not done!

Another thing I've noticed about telling people is the tendency to 'play it down' .... I find myself saying "Luckily its non-malignant", "Luckily its only small", etc. Lucky? Why do I say that when it would be far luckier not to have it at all?

But I don't want to alarm or bore people, I suppose that's the truth of it. Which is one good reason for this blog - I can write down what 'alarms' ME and I don't have to worry about boring anyone!

I've read lots about meningiomas in the past two weeks, a small mountain of information, and I listened carefully to what the specialist had to say, but there are things that I cannot help thinking about.

The tumour
How long has it been there and how fast is it growing? Meningiomas are generally slow growing, possibly over many years, but they can suddenly speed up their growth and/or become more aggressive. A small percentage of meningiomas are malignant. Is mine?

Tumour site
Mine is in a difficult place to access surgically - but that's OK if they can zap it successfully with the Gamma knife. However, it lies adjacent to a critical area of the brain, the brain stem. Will any permanent damage be done, either through pressure from the tumour, or from the radiosurgery itself?

Brain stem tumours: "Morbidity is due to the location of the space-occupying lesion and compression of surrounding structures; because these structures regulate basic body functions of blood pressure, respiration, and swallowing as well as motor and sensory functions, compression can produce substantial neurological disability."
How do I know what symptoms are 'real' and due to the tumour? Sleep is getting harder to come by due to headache and nausea ... these are worse when lying down but also occur periodically throughout the day.
It seems to me that all this has got worse over the past couple of months. I have been started on Cyclizine but there is no sign of improvement yet after 4 days.

Recently I've been getting sudden bad pains in the top of my head centering on the left side above my eye. And yesterday evening I had a truly hideous headache in the same place that lasted around 2 hours and made my eyes water! I asked the specialist last week how come these pains weren't on the other side of my head to where the tumour is and he more or less shrugged and said that headaches from tumours are not easily explained! Apparently the brain itself does not 'feel' pain but the lining does ....

All my neurological signs were OK on examination so that's good. And I know enough to be aware should anything new appear, like numbness, difficulty balancing, etc. Luckily. And there's that word again!

Wednesday, 25 March 2009

Week 2 ...... so it's a meningioma, now what?

Well it has been quite a roller-coaster ride this week .... from that first telephone call to the neurology appointment. After the GP's phone call I was quite calm and controlled, but possibly due to shock rather than bravery! Facing a very busy week, which included friends staying for three nights, I found myself behaving like a normal, rational human being! At first, that is.

Who to tell?
After discussing it with John I decided that I would just tell the few friends that knew I'd been sent for a CT Scan. I did not want the whole world to know. It seemed to be courting a bad outcome somehow to tell people when I did not know the full extent of the problem ..... Superstitious? You bet!

The major question was when to tell my children in UK? My daughter here in Dunedin was fully aware and with me every step, but I felt it perhaps better to wait until I had full details before worrying the rest of the family. However, my daughter felt that they should know a.s.a.p. and contact was made. My phone and mobile subsequently became red hot (!) but it was good to know that they were concerned and supporting me.

As I've said the first few days seemed calm, if surreal, but towards the end of the first week I became increasingly stressed and tearful. Any kind word and the 'waterworks' started! I seemed to go from 'in control' to defenseless in one fell swoop.

Yesterday, 7 weeks + one day since my GP wrote the referral letter, I went for my neurology appointment at Dunedin hospital. The neurologist was very good - calm, quiet but very approachable and easy to talk to.

What/How big is it? - First up he showed me CT images of my tumour and explained them. He is confident that the tumour is a benign meningioma and its size is currently small at 2cm x 1.7cm x 1cm. There is no way of knowing how long it has been there or what its rate of growth is, but meningiomas are usually very slow growing.

Where is it? - Unfortunately this one is in rather an inaccessible place. It is positioned at the base of the skull and lies in close proximity to the brain stem (medulla oblongata). The vomiting centre is in the brain stem so that explains the nausea! Anyway a decision must be made as to what do about it as there is no 'spare room' down there and the brain stem contains the vital centres for breathing heart, etc (!). It is also where all the sensory and motor nerves pathways are between brain and spinal chord.

Posterior fossa meningiomas (10%)

Posterior fossa meningiomas lie on the underside of the cerebrum within the posterior cranial fossa. The posterior fossa is the deepest, most capacious and anatomically complex of the three cranial fossae, it houses the brainstem and the cerebellum. The brainstem contains all the cranial nerve nuclei and many efferent and afferent fiber tracts that connect the brain with the rest of the body. The cerebellum is the major organ of coordination for all motor functions and mental activities. Located centrally in the posterior fossa is the foramen magnum which is the large opening at the base of the skull through which the spinal cord becomes continuous with the medulla oblongata (part of the brainstem).

Posterior fossa meningiomas include tentorial, clival, cerebellopontine angle and foramen magnum meningiomas. Tentorial meningiomas are those located under the surface of the tentorium cerebelli. Clival meningiomas proceed from the clivus bone in the direction of the middle cranial fossa or the direction of the brainstem. Cerebellopontine angle lesions arise from the medial portion of the petrous bone. Foramen magnum meningiomas arise at or near the anterior rim of the foramen and cause spinal cord compression.

Tumors that arise in the posterior fossa are considered some of the most critical brain lesions due to the limited space in which they can grow and the potential involvement of critical neural structures. For instance they may cause facial symptoms or loss of hearing via compressing either the seventh (facial) or the eighth (acoustic) cranial nerves, respectively. They can compress the brainstem causing clinical manifestations of brain stem compression like cranial nerve deficits, or the cerebellum causing troubles with walking and balance, or the spinal cord causing motor or sensory deficits. Meningiomas in this region can also cause blockage of the flow of the cerebrospinal fluid (CSF), or hydrocephalus, causing the intracranial pressure to rise which usually manifests by headache, blurring of vision, nausea or vomiting.

What are they going to do? - first there will be a case conference to decide the best way of managing my tumour. The decision will be made through discussion between the neurologist, the neurosurgeon and the radiologist:

Waiting and watching is not an option now that I am getting symptoms.

It seems very unlikely that surgery will be attempted because of the difficulty of access and the risk to vital centres.

The most likely course of action will be radio-surgery using the Gamma knife machine. Dunedin has the ONLY hospital offering this special facility in the whole of New Zealand .... how about that for luck! ( 9/4/2009 EDITING to say I think I am wrong about this ..... Dunedin offers cyber-knife surgery but I'm not sure about the Gamma-knife ..... they are different and I will write about the two types of treatment at a later date)


Sunday, 22 March 2009

Week 1 ........ unwelcome news

Last Tuesday (17th March) - I received a phone call from my GP to say that a CT scan has revealed the presence of meningioma and I will soon be seen by a neurologist. My doctor was at pains to reassure me that this does NOT mean that I have "brain cancer" because a meningioma is a benign (non-malignant) tumour which grows on the outer coverings of the brain. It is also slow-growing.

Starting this blog is not particularly easy and this post is probably going to be the most difficult part about it! But finding out that I have a brain tumour seems to me to be a pretty momentous thing and so perhaps I should write things down while I still can. Although my ability to think, speak and write will not necessarily be lost in the weeks to come nothing can be taken for granted - so here goes!

I will admit that I did not have the presence of mind to ask any pertinent questions whatsoever - such as How Big Is It? or even Where Exactly In My Head Is It? No doubt I will find all this out when I see the neurology specialist. I just hope that there is not a long waiting list for an appointment.

Finding out about brain tumours

Of course, since being told of the CT finding I have had my nose hard pressed to the monitor as I searched the Web for information on brain tumours in general and meningiomas in particular!

Symptoms of a brain tumour appear to vary widely according to the size and location of the tumour. Some people have few, if any, symptoms until the tumour is quite large. My own symptoms have been very vague until the past few weeks when I have noticed occasional difficulty finding the right word(s) when writing or speaking ... however I had put this down to natural ageing and also to having lots of things going on in my life! The only regular 'symptom' has been nausea, accompanied by mild headache, that comes and goes in the daytime but regularly wakes me up about 3 a.m. making further sleep impossible. This has been going on for several months but I cannot pin point when it first started.

A useful and comprehensive source of information that I found is A Primer of Brain Tumours - A Patients Reference Manual published online by Massachusetts General Hospital and Harvard Medical School. There seems to be very little by way of information online originating in New Zealand, which is a shame. However, USA and UK seem to have a number of resources which I will continue to explore and, as I find links and resources, I will list them on this blog.


Meningiomas arise from the coverings of the brain called the "meninges". There are three layers .... the dura mater (outer layer), the arachnoid (the middle layer) and the pia mater (inner layer). Meningiomas grow out of the middle layer and account for around 20% of all primary brain tumours (primary tumours are ones that have not spread from a tumour elsewhere in the body). If located in an accessible area, surgery may be the treatment of choice for a meningioma but I don't yet know where mine is. If the meningioma is sited in a more difficult area then partial removal may be possible, and some meningiomas may require additional treatment such as radiology or chemotherapy.

Though the majority of meningiomas are benign, they can have malignant presentations. Classification of meningiomas are based upon the WHO classification system.

  • Benign (Grade I) - (90%) - meningothelial, fibrous, transitional, psammomatous, angioblastic (most aggressive)
  • Atypical (Grade II) - (7%) - choroid, clear cell, atypical
  • Anaplastic/malignant (Grade III) - (2%) - papillary, rhabdoid, anaplastic
As an ex-nurse I remember that we used to refer to all tumours, whether benign or malignant, as SOL's (space occupying lesions) so although meningiomas are generally described as 'benign' they can still cause damage by taking up 'space' and pressing against the brain. I will feel happier once I know more about its exact size and position.... at least I think I will.