Press clippings
Web site discovery spares bill
A search on the internet found a treatment for a 53 year old
man’s brain tumour which avoided intrusive brain surgery.
Now Bill Shaw is advising anybody diagnosed with a serious
disease to ask questions before making any decisions. Bill Shaw of
Chute Cadley, was diagnosed with acoustic neuroma in March and told
if it was not treated he would die within five to to years. But
Bill, who is a nonexecutive chairman of Bowyer Engineering, and
tutors Open University students in business administration,
discovered the 'Gamma Knife' through the internet. It can treat
tumours without surgery.
Bill had been suffering from hearing loss in his right ear for
more than 10 years but assumed it was because he had been a Naval
Officer and was exposed to explosives and gun fire. An assessment
five years ago said the problem was so minor no action needed to be
taken.
But earlier this year Bill saw another ENT specialist who
ordered a MRI scan as there was a chance he could have a brain
tumour. The Consultant's only recommendation was to go straight to
Southampton General Hospital for brain surgery.
Bill said: "I was particularly concerned because the treatment
and the results seemed out of all proportion to the symptoms I was
suffering."
Bill's condition is very rare and only affects one in 100,000.
But he and his wife Jeni were told that unless something was done
the tumour would grow, trap Bill's brain stem and kill him.
Devastated, the couple decided to search the internet, and Bill
discovered a website devoted to people suffering from acoustic
neuroms. "The message coming from this website was there were other
treatments available to sufferers and surgery should be viewed as a
last resort," said Bill.
After a number of visits to specialists, more tests and a
lengthy discussion about microsurgery - which Jeni described as
'horrendous' - the couple found a leading Neurosurgeon at Cromwell
Hospital in London.
Bill was accepted for treatment and had radiosurgery on the 10th
of May. He went home the same evening and the next day he was
marking papers. There is now a two-year wait to see if the
treatment has been successful,
Jeni said: "The only reason Bill managed to have this treatment
was because we asked questions."
By Julie Skinner
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Bill avoids surgeons knife with gamma op
More than 80,000 people from all over the world have
successfully undergone Gamma Knife treatment, even though it is not
widely available in this country.
And Bill Shaw, aged 53, of Chute Cadley, was only the third
person to use the brand new equipment at the Cromwell Hospital in
London when having treatment for a brain tumour which was so rare
it affects only one in 100,000. The type of tumour he had, an
acoustic neuroma, grows in the space between the brain stem and the
acoustic and facial nerve.
As it grows it spreads and causes hearing loss, lack of balance
and can, if not treated, kill. Bill said: The problem with the
surgical removal of brain tumours is it removes the hearing and
balance mechanism from the affected ear and can cause headaches and
facial nerve palsy."
But specialists practicing Gamma Knife surgery treating tumours
with gamma radiation claim it introduces none of these problems and
allows the patient to maintain their existing quality of life. In
the few cases where microsurgery does not arrest the growth,
follow-up radiosurgery or micro-surgery can still be performed with
little or no added dificulty.
There is also none of the risks usually associated with surgery,
a short inpatient time and almost no recovery period. Supporters of
ME treatment also argue Gamma Knife surgery is considerably less
costly than ME micro-surgical alternative.
The effectiveness of Gamma Knife surgery will usually show
within six to 24 months after the treatment. In 95 per cent of
cases it has halted tumour growth. Each case is reviewed to ensure
the patient's condition is suitable for such treatment. The
decision to have the treatment, which can be used for a number of
tumours and growths, should be based primarily on results, not a
fear of brain surgery.
Comparisons should also be made with other treatments and ME
patient should get information about the different options
available.
Gamma Knife surgery should not be considered instead of
microsurgery for the vast majority of patients, including young and
otherwise healthy individuals.
The whole procedure lasts three to six hours depending on the
condition being treated. The Gamma Knife is used exclusively for
the brain and cannot be used to treat conditions in any other part
of the body.
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My gamma knife story
Dear Postbag,
As a consequence of an abnormal hearing test, an MRI scan in
March 1998 revealed a small (18 x 10 x I lmrn ) unilateral acoustic
neuroma in my right ear. In May 1998, the Consultant ENT Surgeon at
Southampton General Hospital advised surgery as the only option and
placed me on a waiting list for translabyrinthine micro-surgical
removal, provisional for the end of 1998. After being on the NHS
waiting list for over 10 months, I was finally scheduled for the
surgery on the 25th March 1999, only to be told the day before that
the unit had been closed down for at least a month and no new date
could be assigned.
I am a committed Christian and had asked a lot of people to pray
for me throughout this period. Shortly after the cancellation, I
realised that this was indeed the answer to their prayers, but what
was to happen next? A series of positive and profound events have
guided me to alternative Gamma Knife Radiosurgery performed
privately at Cromwell Hospital, London on the 11th May.
The frame fitting, MRI and CT scans, and Gamma Knife treatment
(6 zaps. each less than 5 minutes) took about 6 hours, with little
discomfort. Under the direction of Mr. Christer Lindquist, the
Cromwell team were very courteous, helpful and informative
throughout and the equipment is state-of-the-art technology. My
only medication was a local anaesthetic applied for frame fitting.
Shortly after the frame was removed, I developed a dull headache,
which quickly cleared with 2 ibuprofen. I went home that evening
and back to work the next day. On the second day I had mild balance
disorientation when quickly moving my gaze but that cleared within
a day. I have had no further problems or any obvious change in my
symptoms (little useful hearing and tolerable tinnitus in my right
ear which has gradually become a little worse over the past 2
years).
After extensive Internet searches and discussions with various
radiology experts, I am convinced that Gamma Knife Radiosurgery
should be the treatment of choice for many middle aged older
patients (I am 52) with small medium unilateral acoustic neuromas,
as it is in Sweden, much of the USA and elsewhere. With the more
precise targeting and lower dose rates now in use. Recent extracts
from medical journals confirm long term growth control shrinkage in
92 to 98% of the cases, with complications to facial/other nerves
reduced to <7% and preservation of the same level of hearing in
about half the cases. Gamma Knife Radiosurgery has been used on
more than 100,000 patients world-wide since its inception in 1969.
Alternative radiotherapy techniques (including LINAC FSR) are also
being applied to acoustic neuromas, with promising short-term
results, but there is not enough history to establish long-term
effects, and the targeting precision is not as good as Gamma Knife.
The surgical and FSR fraternities often quote older, less
favourable Gamma Knife statistics to strengthen their own causes
(which initially led me to dismiss Gamma Knife last summer).
Surgical removal is considered the only "cure", but for
small/medium neuromas, often the cure is worse than the disease.
The neuroma only creates problems if it keeps growing. Translab
micro-surgery removes the hearing and balance mechanism from the
affected ear, often results in headaches and facial nerve palsy
which may or may not improve over time, and occasionally leads to
meningitis or other complications. Non-invasive radiosurgery
introduces none of these problems and allows the patient to
maintain his existing quality of life. In the few cases where
radiosurgery does not arrest the growth, follow-up radiosurgery or
micro-surgery can still be performed with little or no added
difficulty.
The effects of acoustic neuroma radiosurgery usually manifest
themselves within 6 to 24 months following the treatment. Cromwell
recommend follow-up MRI scans typically at 6 months, year 1, year
2, and then probably less frequently if growth control has been
established. I believe that I was led from micro-surgery to Gamma
Knife Radiosurgery in such a dramatic way for a reason; to help
convince the UK medical fraternity and acoustic neuroma patients
that radiosurgery should be the treatment of choice in many cases.
I have written to my local healthy authority and those medical
personnel involved in my case, to inform them of my treatment and
attached various recent medical journal extracts, which support the
Gamma Knife statistics. From the financial standpoint, Gamma Knife
treatment is considerably less costly than the
micro-surgical/post-op alternative. So it seems to be in the best
interest of both the patient and the NHS to treat more acoustic
neuromas with radio-surgery. This would also reduce the long
micro-surgery waiting lists (in my case, over II months at
Southampton General) and preferably have more NHS referrals to
Cromwell to avoid further extending Royal Hallamshire Sheffield's
current 4 month Gamma Knife Radiosurgery NHS waiting list.
I had the opportunity to tell my story to several BANA members
at the AGM in Bristol on the 26th June. If anyone wishes to discuss
details of my Gamma Knife treatment and the published statistics,
please feel free to contact me on: 01202 885 253
Wayne Naseman, Wimborne, Dorset
Editor's notes:
I would like to remind readers that BANA does not endorse or
specifically recommend any particular treatment method for acoustic
neuroma. BANA's role is to remain impartial, whilst informing
patients of treatment options.
Your consultant will be able to talk these through with
you.
Presently, I am receiving more letters about radiosurgery than
about any other subject. This is, therefore, reflected in the NL. I
would like to invite specialists, neurosurgeons and ENT surgeons to
air their views on the merits of microsurgery versus
radiosurgery.
Janet Mercer
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