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NOgIN News
Issue 5 - March 13
Co-ordinators
Comment
Welcome to our 5th edition of
NOgIN News, the official newsletter
for NOgIN.
Our group was launched six years
ago and continues to provide a very
successful, highly regarded service,
for our patients and their carers
living in Western Sydney.
This success would not be possible
without the ongoing support and
funding we receive from Westmead
Private Hospital, and the presenters
who give up their evenings for us. A
big thank-you to you all, we couldn’t
do this without your commitment.
2011/2012 achievements:
• Continuation of information
nights every second month at
Westmead Private Hospital, with
total attending throughout 2012
reaching 228.
• A “Carers Only Night”, dinner with
the panel of experts, was held on
1st September 2011. The expert
panel included Dr Dexter, Dr Lee,
Dr Wong and Diane Lear. The
evening was highly evaluated by
the carers that attended.
• International Brain Tumour
Awareness Week November 2011
& 2012.
• NOgIN presentation at
Australasian Neuroscience Nurses
Association Annual Scientific
Meeting , Perth, October 2011. “A
Nurse Co-ordinated Brain Tumour
Support Group: A Five Year
Review”
• NOgIN presentation at the NSW
Nurses and Midwives Conference,
Ramsay Health Care, Sydney,
October 2011
• NOgIN Nursing Scholarship
awarded to Bernice Appiah, to
attend Neuroscience nursing
conference. Bernice was awarded
the first time presenters award
for her presentation titled “Needs
and challenges of Brain Tumour
Patients post-discharge: pilot
study”.
Carer’s Only Night
• NOgIN travel assistance scheme.
• Really loved the format, the
discussion with others, doctors
questions and the contact with
Westmead team members.
Finally, once again we acknowledge
the support of our multidisciplinary
consultants, who provide ongoing
support for the development of
NOgIN.
Dinner with panel of experts
An enjoyable and informative
night was held with 20 carers/staff.
Participants were asked what was the
most beneficial aspect of the evening?
Comments included:
Thank you
• Being able to talk to the doctors
without the patient present - we
often don’t get to talk about the
tough questions
Emma & Dianne
NOgIN Coordinators
• Networking with the consultants
and other carers
Fundraising
• Tonight and all the other NOgIN
gatherings have made a huge
difference to me in my day to day
life as a carer
Staff and volunteers from across
Westmead Private and Westmead
Public Hospital worked tirelessly
selling sausage sandwiches and
home baked goods on Thursday 8th
November 2012, to promote NOgIN
and International Brain Tumour
Awareness week. A huge thank you
to this amazing team and a special
thank you to Steve Carlaw from
Bungaree Butchery, 22 Bungaree
Road, Toongabbie, for once again
donating 350 sausages.
With this amazing team effort
we were able to contribute to
our NOgIN trust fund held at
the Westmead Medical Research
Foundation.
“Carers Only Dinner” with panel of expert
Dr Phillip Lee pictured with carers
Inside This Issue:
• Coordinators comments
• NOgIN Nursing Scholarship
Report
• Information Sessions Summaries
• 2013 Program
• Ruths Story
NOgIN
Nursing
Staff & Volunteers helping at fundraiser
NOgIN Websites
www.westmeadprivate.com.au
www.westmeadneurosurgery.com.au
Scholarship
Report
Last year in October 2011, I got
the opportunity to present my
research study (as part of my
Honours program at Australian
Catholic University) at the ANNA
Neuroscience conference in Perth.
My research study is “A pilot study
of post discharge needs of people
who had removal of a primary brain
tumour”. In this study I investigated
how people with brain tumours
cope after being discharged from
hospital.
I would like to express my sincere
gratitude to NOgIN for their
generous financial support towards
conference expenses. I thought the
conference was fantastic. I shared
the “first time presenter award”
with another presenter. I got the
privilege of hearing current research
that others are involved in and
learnt about various nurse-initiated
support groups.
There were two presentations
that made a big impression on
me. The first was about a woman
who spoke about her experience
of having a brain tumour and her
journey through that terrible time.
The second one was a case study
presentation about a patient who
had a shunt since childhood and
suffered many complications.
This conference made a positive
impact on me and it opened my
eyes to new opportunities in
neuroscience nursing. I met some
wonderful nurses at the conference
and many of them were Westmead
nurses.
Again, I’d like to express my sincere
thanks to NOgIN and I would like to
congratulate them for the excellent
work they continue to do in
supporting patients and their carers
with brain tumours!
• Terminal (dying with the disease)
Information
Session
Summaries
Death imminent
Prognosis: hours or days
Palliative Care Assessment
Session 1
What does the patient and family
understand about their disease and
stage of their disease?
Where Does Palliative Care Belong?
What are their goals?
Presented by: Dr Phillip Lee (Palliative
Care Consultant)
• Patient goals
Palliative Care Definition: An
approach that improves the quality
of life of patient’s and their families
facing the problems associated with
a life threatening illness.
• Provides relief from pain
• Affirms life and regards dying as
a normal process
• Intends to neither prolong life or
prolong suffering
• Offers a support system
• Maximise life
• Minimise suffering
Palliative Care Team
• General Practitioner (GP)
• Community nurse
• Palliative care Clinical Nurse
Consultant (CNC)
• Palliative care specialist
• Allied health
• Hospital
• Family / carer goals
• Health professional goals
Negotiating ceasing active
treatment:
The patient and their carers deserve
a frank assessment of the likelihood
of a response to treatment and
the duration of the response.
The primary patient goals are to
maintain dignity and control.
Summary
• Dying is normal
• Palliative care may prolong
life but not at the expense of
prolonging suffering
• Palliative care focuses on quality
of life “living well”
• Palliative care does not actively
shorten life
• Palliative care is a patient choice
with family support
“How people die remains in the
memory of those who live on”
• Hospice
• Aged care facilities
• Pastoral care
• Volunteers
Session 2
Overview of Neurosurgery and Brain
Tumours
• Families and carers
Presented by: Dr Mark Dexter
(Consultant Neurosurgeon)
Life Limiting Disease
Westmead has three hospitals on
its campus including, Westmead
Hospital, Westmead Private Hospital
and The Childrens’ Hospital at
Westmead. Approximately 400
patients are diagnosed with a
brain tumour every year between
these three hospitals. Gliomas are
the largest group but other brain
tumours include, meningiomas,
cerebral metastasis, pituitary
tumours and others including
epilepsy surgery.
Management Goals
By:
• Curative (beating it)
Bernice Appiah
RN Westmead
Private
Hospital
Cure or curable remissions
Prognosis: years
• Palliative (living with the disease)
Disease incurable and progressive
Prognosis: weeks, months, can be
years
Tumours are classified into primary and
secondary.
Q. Does the radiation from CT scans
cause brain tumours?
Primary:
A. The radiation risk from a CT scan is
small and often the risk from not having
the CT scan for example if you suspect
a haemorrhage may be more.
• Glioma – involve the cells of the
brain
• Meningioma – involve the
covering of the brain
• Schwannoma – involves the
peripheral nerves
• Pituitary adenoma – lesions of the
pituitary gland
Secondary:
• Metastasis from the lung, breast,
melanoma, renal or another site
Investigations:
• Clinical Imaging – CT scan, MRI
• Metabolic Imaging – PET, SPECT
Primary brain tumours
Incidence
• 14/100,000 per year
• 6-8//100,00 are high grade
tumours
• Overall statistics are stable
despite research such as mobile
phone studies, with a slight
increase in benign brain tumours
• Tumour pathology is based on
the World Health Organisation
(WHO) grading system and are
graded 1 to 4.
• Grade 1 tumours are mostly
benign and grade 4 tumours are
the most malignant, glioblastoma
multiforme (GBM).
Management:
• Surgery including biopsy and
complete removal, or debulking
• Medications
• Chemotherapy
• Radiotherapy
Dr Mark Dexter with
patient at NOgIN Meeting
shunts are infection which presents
with fever and neck stiffness, and
blockage which presents with
headache and nausea/vomiting.
After a MRI most shunt settings
need to be checked.
Q. Why would you choose to order a CT
scan rather than an MRI for a child?
A. In a child a general anaesthetc is
required for a MRI which carries a risk.
Q. What happens during my
surgery?
Session 3
Common Medications in Brain
Tumour Treatment and Their
Complications
A.Fiducials (small button like
structures) are placed over the head
to allow the computer or image
guided system to locate the exact
location of the brain tumour. This
also identifies eloquent brain tissue
for example, the speech and motor
areas. Small burr holes are then
made and a small area of the bone
is lifted off exposing the covering of
the brain. Using the image guided
system the brain tumour is biopsied
or removed and sent to pathology
for analysis. The bone is then
replaced and locked into place with
titanium pins and bone cement.
The skin is then either stitched or
stapled together. A deep but short
acting anaesthetic is used so you
can be woken after the operation to
allow for an immediate neurological
assessment
Presented by: Dr Jacqueline
McMaster (Consultant
Neurosurgeon)
Q. Do the titanium pins affect the
MRI scan?
Phenytoin (Dilantin)
A. All the pins are MRI compatible
and will not set off metal detectors.
Prior to the introduction of the pins
sutures were used but the bone
often sank, the pins give a much
better cosmetic result.
Anti-Epileptic Medications
Preventative:
• Administered prior to surgery for
patients with a brain tumour in a
specific part of the brain
• Administered after surgery for up
to 3 months
• There are no recommendations
for prevention of seizures in
patients that are not undergoing
surgery
Therapeutic:
• Administered if the patient
presents with a seizure and
continued after surgery for up to
12 months
• Stabilises the sodium channels in
the brain and prevents the spread
of abnormal electrical activity
• The most common anti seizure
medication
• Used for most seizure types
Q. What causes the strange
sensation around the wound?
• Can be administered either orally
or intravenously
A. The nerves can be hypersensitive
for 1 to 2 years after an operation.
Sun and heat for example from
hair dryers can also increase the
hypersensitivity. Some patients say it
feels like small insects crawling over
their head.
• Regular blood tests for levels
need to be taken by your GP
Q. What precautions do you need
to take when having an MRI if you
have a shunt?
• Cognitive (thinking) disturbance
A. It is important to know what
type of shunt you have. Some shunts
are MRI compatible and some
shunts are not. The biggest risks of
Side Effects
• Rash
• Drowsiness
• Overgrowth of gums
• Liver disturbances
• Unsteadiness and visual
disturbances in toxic (too high)
levels
Carbamezepine (Tegretol)
Headache Medications
Side Effects:
• Unknown mechanism of action
but may block repeated nerve
firing
Dexamethasone (Decadron)
• Nausea
• A steroid that is 20-30 times
stronger than the body’s natural
steroids
• Constipation
• Mainly used for focal seizures
• Avoid if you have had a previous
reaction to Phenytoin
• Regular blood tests for levels need
to be taken by your local doctor
Side Effects
• Rash
• Low salt levels in the blood
• Low white cell count
• Decreases fluid in the abnormal
blood vessels of the brain tumour
producing a reduction in the
swollen area surrounding the
brain tumour (cerebral oedema)
- Decrease brain swelling before
and after surgery
There is an increased risk of
developing stomach ulcers or
gastritis (an irritation of the stomach
lining) due to a stress response or as
a medication side effect
• Liver disturbances
• Variable doses
Valporate (Epilum)
- High dose initially (4mgs x 4
times per day)
Side Effects:
• Low platelet functioning which
can cause bleeding
• Hair loss usually temporary
• Nausea and vomiting
Levetiracetam (Keppra)
• One of the newer anti seizure
drugs
• The mechanism of action is
unclear but may block the nerve
conduction
• Mostly used for partial seizures
• Better tolerated than a lot of
other anti seizure medications
Side Effects
• Drowsiness
• Malaise
• Dependence and tolerance with
long term use
Stomach Protectants
• Nausea and vomiting
• Mainly used for partial and
absence seizures
• Respiratory depression and must
be used with caution in drowsy
patients
• Plays 2 main roles in neurosurgery
- Decreases brain swelling during
radiotherapy
• Modifies the neurotransmitter
levels in the brain
• Dizziness, light headedness
Ranitidine (Zantac)
• Prevents stomach acid production
• Protects against
- Maintenance low dose during
radiotherapy
- Gastric erosions
- Needs to be tapered off slowly
- Stress ulcer formation
- If there is a tumour and/or
oedema recurrence the dose
may need to be increased
Omeprazole (Losec)
Side Effects:
• Interacts with other drugs
• Weight gain
• High blood sugar
• High blood pressure
• Vertigo
• Acne
• Blurred vision
• Hirsuitism
• Severe depression
• Cognitive difficulties
Paracetamol (Panadol)
• A simple analgesic for post
operative pain relief
• Acts in the stomach to block acid
production
-Warfarin
- Anti fungals
- Anti depressants
- Anti Nausea Agents
• Used post operative
• Used with chemotherapy agents
• Used secondary to some
analgesics
• Used for the nausea associated
with brain swelling
Oral Chemotherapy Agents
Temozolomide (Temodal)
• Infections
• No anti clotting effects like
other anti inflammatories such as
Aspirin
• Cytotoxic mechanism of action,
blocking the DNA preventing the
duplication of malignant cells
Lamotrigine (Lamictal)
• Well tolerated
• Cyclical dosing
• Mostly used for partial seizures
• May interfere with the liver
• Unclear mechanism of action but
may block the sodium channels
Oxycodone (Endone)
• 4 week cycle – 1 week on, 3 weeks
off
• Headache
Side Effects:
• Usually well tolerated
• Rash
• Fatigue
• Malaise
• A powerful pain medication that
is the same family as morphine
• Short term use only particulary
after surgery for the first few days
• Comes in short acting and slow
release forms
• Better tolerated than other
chemotherapy agents
Side Effects:
• Headache
• Nausea and vomiting
• Fatigue/tiredness
• Constipation
• Hair loss
• Anorexia
• Decreased white cell count
• Decreased platelet count
Q. Why do my legs always ache
when I take the chemotherapy?
A. Temodal can cause myopathy
(muscle weakness)
Q. Is it okay to do long distance
running when you are taking
steroids?
A. It is important to stay as active as
you can without overdoing it.
of 6 months, if left untreated.
It originates from the glial cells
(supporting structures) in the brain.
Recurrence is common.
Prior to 2006 chemotherapy
was not used for brain tumours.
Temozolamide (Temodal) is an oral
chemotherapy agent which is taken
for 6 weeks with radiotherapy
followed by cyclical Temodal. It
provides good penetration into the
central nervous system and binds
to the DNA preventing the cells
from reproducing and enhances the
effect of radiotherapy making it
more potent (radio sensitizer).
Q. What are the side effects of
drinking alcohol when you are
taking Phenytoin (Dilantin)?
Side effects of chemotherapy:
A. Most medications are
metabolised by either the liver
or kidneys and phenytoin is
metabolized in the liver. This means
that both the alcohol and the
phenytoin are both competing for
the enzymes in the liver to break
them down resulting in either
excessively high levels or extremely
low levels of the medication.
• Nausea
Session 4
Benefits and Demonstration of a
Seated Massage
• Lethargy
• Altered taste
• Opportunistic infections eg;
pneumonitis, hepatitis B
reactivation, risk is also increased
with concomitant high dose
steroids (Dexamethasone)
• Increased late side effects of
radiotherapy
Q. If you have been vaccinated
for hepatitis B can the virus be
reactivated?
A. No.
Presented by: Tony Wilson(Oncology
Massage Therapist from Therapy
One)
Before considering tumour
recurrence there are other things to
consider, such as:
Evaluations from attendees
included:
• Radiation effect/radiation
necrosis
• learning massage was simple and
concise and very useful
• Pseudoprogression if less than 12
weeks following radiotherapy
• the talk on massage and being
massaged was wonderful
• 50% of patient’s will have
an abnormal scan following
radiotherapy
• Tony is a gently spoken man
who confidently explains simple
massage techniques that anybody
can perform
Management of recurrence:
• Surgery
• Radiotherapy again (extremely
rare)
• Other chemotherapy agents
Session 6
Managing changes to thinking and
behavior after the diagnosis of a
brain tumour
Presented by: Dr Dianne Whiting
(Clinical Psychologist, Brain Injury
Rehabilitation Unit, Liverpool
Hospital)
There are three stages of a disease
process, the diagnosis, treatment
modalities and the recovery phase.
Following the diagnosis of a brain
tumour patients often experience
behavioral, emotional and cognitive
changes, which can vary from mild
to extreme. Most patient’s can
only concentrate on one thing at
a time and have difficulty multi
tasking. Fatigue and the emotional
roller coaster can make it even
more difficult to concentrate and
maintain attention. Here are some
helpul tips to assist you:
• Acknowledge the problem exists
• Organise your environment
• Use “cue” cards
• Prioritise and undertake the
important tasks when you are
most awake and feel you can
concentrate better
• Take breaks when you feel you
need them
• Break things down into smaller
tasks
• Know your limitations
• Try not to schedule too many
things on the one day
Session 5
Chemotherapy for Brain Tumours
• Try to reduce external noise and
reduce visitors if you are feeling
overwhelmed
Presented by: Dr Mark Wong
(Medical Oncologist)
A glioblastoma multiforme (GBM)
is the most common primary brain
tumour which is highly aggressive
with an average survival rate
• 2/3 of all patient’s original scans
will have improved 6 months
following radiotherapy
Casual chat and supper prior to NOgIN session
Session 7
Causes of and Current Research in
Brain Tumours
Presented by: Dr Mark Dexter
(Consultant Neurosurgeon)
Incidence of brain tumours – 14
cases per 100,000 per year, 6-8 of
these are malignant.
Possible confounding factors
relating to the incidence of brain
tumours:
• Improvement in diagnostic
imaging
• Increased number of
neurosurgeons
• Improved access to medical
care, particulary in the elderly
population
Risk factors that have been
investigated in studies of brain
tumours include:
• Hereditary syndromes
• Family history
• History of prior cancer elsewhere
in the body
• Constitutive polymorphisms
(alterations in genes) – more
common in other cancers
• Head trauma
• Ionizing radiation
• Mobile phones
• Living near power lines
• Diet, tobacco, alcohol
Hereditary syndromes proven to
be associated with brain tumours
include:
Neurofibromatosis Type 1
• Autosomal dominant gene on
Chromosome 17
• Produces astrocytomas,
meningiomas, neuroblastomas
and peripheral nerve
neurofibromas
Neurofibromatosis Type II
• Autosomal dominant gene on
Chromosone 22
• Produces acoustic neuromas,
meningiomas and neurofibromas
Genetics and family history
• A general predisposition in 2-8%
of all cases of primary brain
tumours
• There is an increased risk in family
members estimated at 1-10%
Ionizing (therapeutic) radiation and
brain tumours
Q. Would Temozolamide work more
effectively if it was given prior to
radiotherapy?
A. Studies have proven they work
more effectively when given
together.
There is an increased risk of
developing a primary brain tumour
after a wide range of exposure
Q. Is there much research in stem cells?
Low dose radiotherapy used in
the 1940s and 1950’s for tinea
capitus (cradle cap) and skin lesions
increased the risk of developing a
brain tumour
A. Yes, there is in other disease
processes such as Parkinsons
Disease, stroke and spinal cord
injury but not in brain tumours at
present.
High dose radiotherapy used in the
1980’s for children with leukemia
increased the risk of developing a
brain tumour
Q. Will gamma knife surgery be
used in Australia in the future?
Q. Is there a risk of radiation from
having a CT scan.
A. The radiation is a very low
dose with new imaging used and
always used with caution. The risk
of not having a scan and missing a
diagnosis should be weighed up.
Factors associated with an
intermediate risk for developing a
brain tumour:
• Prior primary systemic malignancy
• Previous head injury
• Prenatal exposure to radiation
• Smoking is associated with lung
cancer
• There is no association with
alcohol
Mobile Phones and Brain Tumours
(Interphone Study)
Results
• No increased risk of glioma or
meningioma observed
• Slight increased risk of glioma
at the highest mobile phone
exposure levels
A. There is no difference between
gamma knife and stereotactic
radiosurgery which is used in
Australia. Stereotactic radiosurgery
delivers a high dose of radiotherapy
in a single session focusing on a
particular target area. Gamma
knife is only used for the head, is
not covered by Medicare and the
cost is approximately $25,000 for
treatment.
Advances in Neuro Imaging
• PET scans – glucose uptake shows
increased metabolism in active
tumour cells
• 3T MRI scans – map fibre
pathways
Advances in Surgical Technique
• Image guided surgery
• Minimally invasive surgery
• Cortical mapping
• “Awake” craniotomy
Take Home Message
For the majority of patients there is
no scientifically proven reason why
you have developed a brain tumour
It is not your fault
• There were many confounding
factors not well studied and the
effects of long term heavy mobile
phone use requires further
investigation
You will not pass this on to your
partner or children
Q. Where was the study conducted?
Presented by: Dr Gordon Dandie
(Consultant Neurosurgeon)
A. 14 countries were involved in the
study which was partially funded
by mobile phone companies. In
Australia, Royal Prince Alfred
Hospital in Sydney and The Royal
Hospital in Melbourne were
involved.
Meningiomas
• Arise from the arachnoid cap cells
• Account for 28% of all
intracranial tumours
• Peak incidence 40-50 years
• More common in females,
however the more aggressive
type is more common inmales
Environmental factors
Q. What are the rules for driving after
removal of a brain tumour?
Q. Can you stop taking anti seizure
medications?
A. Any blood on the surface of the
brain can irritate it and cause a seizure.
The greatest risk is the first 6 weeks.
Three months after surgery the seizure
risk is significantly reduced. The
guidelines are NSW law and can be
found on the RTA website.
A. Anti seizure medications must be
weaned and not stopped abruptly
especially if the patient has a
structural lesion such as a tumour
otherwise there is an increased risk
of more seizures.
Genetics
Management of Seizures
• In 50% of cases there are changes
in chromosome 22 q12
Presented by: Dr Andrew Bleasel
(Consultant Neurologist)
A. No, not generally, although
patients may experience an auditory
aura or hallucination.
Prognosis
Q. Is anxiety a side effect of anti
seizure medications?
• Exposure to radiation/radiotherapy
• Previous head trauma
• Possibly the sex hormone
progesterone
Location
• Mainly over the convexity of the
brain, parasaggital or sphenoid
wing
• The major factor in prognosis is
the extent of tumour resection
Recurrence
• Benign 7-20%
A. Some anti seizure medications
for example Keppra, can cause
anxiety, depression and irritiability
in approximately 10% of patients.
• Atypical 29-38%
• Anaplastic 50-78%
UR INFORMATION
& SUPPORT
GROUP
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receptor negative
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1.Palliative Care
2. Chemotherapy treatment for
brain tumours
1.Dr Phillip Lee
Palliative Care Consultant
2.Dr. Mark Wong
Oncologist
Tuesday 9th
April
1. Radiotherapy treatment for
brain tumours
2. Managing cognitive and
behavioural changes
1.Dr. Nahar
Radiation Oncologist
2. Diane Whiting
Clinical Psychologist
Tuesday 4th
June
1. Role of the neurosurgeon in
the management of brain tumours
Dr Mark Dexter
Consultant Neurosurgeon
2. Management of seizures and
driving
1. An overview of brain anatomy
and physiology
2. Types of gliomas
Dr Andrew Bleasel
Neurologist
Dr Gordon Dandie
Consultant Neurological and
Spinal Surgeon
Tuesday 1st
October
1.What is the current research for
brain tumours
1.Dr Jacqueline McMaster
Consultant Neurosurgeon
2. Physiotherapist
Tuesday 3rd
December
2.Gentle exercises for patients
with a brain tumour
1. What services are available for
carers
Tuesday 5th
February
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Patient recevied flowers for lucky
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Factory at NOgIN Meeting
INFORMATION SESSION DATES- 2013
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with a braintends
tumour,
and their
to control
the
Q. Can having seizures affect your
hearing?
Tuesday 6th
August
2.The patient journey
TBC = To Be Confirmed
1.Mary Magias
Carers Association NSW
2.Guest speakers from
NOgIN
All sessions subject to change
RSVP essential please, as limited seating
Ruth’s Story
MY EXPERIENCE WITH A BRAIN
TUMOR
I couldn’t believe it when my
General Practitioner said “I would
like you to have a brain scan”. You
could have knocked me off my
chair! I expected to be prescribed
anti-depressant medication.
I am a 68 year-old female, and I
will start at the beginning, to the
events that led up to this visit to
my doctor. In January 2010 I had a
routine mammogram - I had been
called in yearly as my mother had
suffered breast cancer, and this was
my 14th mammogram. I recalled,
had a biopsy which showed a very
small, non-aggressive cancer. I had
the tumor removed, and followed
up with 6 weeks of radiation daily
(didn’t require chemotherapy
fortunately).
I didn’t feel crash hot from the time
of the surgery (and probably even
before if I think about it), and
knew that I wasn’t myself. Friends
told me that I had lost my spark,
and I was aware that I had gone
from being quite talkative, to very
quiet and feeling depressed.
I had been told by friends who had
undergone radiation, that they felt
extremely tired for some time after
treatment concluded - in addition I
was taken off hormone replacement
therapy which I had used for some
15 years - and so in my mind there
was a couple of very valid reasons
why I was not feeling myself.
What I didn’t realize that I was
undergoing personality change,
which worsened as the year went
along. Apparently I was also quite
snappy with my husband and some
very dear friends who tried to tell
me that I should see the doctor. As
the year went on, I began to have
problems with incontinence, and
thought to myself “that will have to
be rectified surgically.”
Within the 6 weeks prior to
diagnosis of my meningioma
(non-malignant but as big as my
surgeon’s fist he told me - huge),
I suffered quite severe cognitive
problems. I went into a large unit
block to visit someone, and when I
came back down into the courtyard,
I couldn’t find my way out to the
street. I tried to get to the front of
the building on the lawn, but was
so disoriented in the dark that I
ended up in the back yard, with no
gate to the outside. Finally I went
back to the courtyard and found the
exit. Then couldn’t find my car till I
pressed the opening button on the
key and it flashed.
Unfortunately after three weeks
recuperating at home, an infection
set up in the wound, and I was
readmitted to have intravenous
antibiotics. The germ was
called morganella morganii, and
pathology showed that it only
responded to one antibiotic which is
only available in intravenous form.
So four weeks in hospital on the
drip till the wound stopped seeping,
followed by three more weeks at
home with a PAC nurse coming daily
to administer the drug.
Three months on, I am feeling
well and so glad to be my old self
again. All the personality and
cognitive problems disappeared
(and incontinence - magic!) within
a couple of days of surgery I am
pleased to say, and I am leading a
pretty normal life now.
The support of the Clinical
Neurological Nurse Consultants
at Westmead was tremendous,
and I can’t thank them enough,
especially Emma Everingham who
really helped me so much with
organization of the PAC team and
getting me home.
I also went the wrong way to a
dental surgery which I have been
attending for over 40 years, and
ended up in Leichhardt instead of
Homebush.
So finally I agreed to see the doctor
and my husband came with me to
fill him in on my behaviour. Hence
the brain scan. I was admitted
to hospital within a week, had
the meningioma removed, and
was sent home after one week.
Ruth Inglis
(Marriage and Funeral Celebrant)
Disclaimer: This newsletter does not intend to replace individual treatment prescribed by your physician.
No part or whole of this newsletter may be reproduced without permission of the NOgIN coordinators/editors ©
NOgIN would like to thank Westmead Private Hospital Executive Team for their ongoing support, providing
the conference room, supper, free parking and making the publication of this newsletter possible.
Contacts:
Emma & Diane
Emma Everingham
Clinical Nurse Consultant
Westmead Private Hospital
02 8837 8926
[email protected]
Diane Lear
Clinical Nurse Consultant
Westmead Hospital
0408 184 833
[email protected]