Neville's Story
Diagnosis:
Date written: 8/98
NEVILLE'S STORY
Neville has just turned 12 . As with all the other stories I have been
priveledged to read at the pffdvsg site , the road has not been an easy one
. Unfortunately , there is no clear finishing line and one just takes one
day at a time and overcomes challenges as they occur . Neville has used a
prosthesis when not at home since he began walking . He has had one surgical
attempt at stabilizing the hip , but otherwise all the bits and pieces are
still in place and appear set to remain that way . The dilemma of course
is that prostheses become cumbersome as one grows . Neville is currently
growing at a tremendous rate and becoming quite muscular !
INTRODUCTION
I believe that God has a plan for each of our lives and look upon Neville's
condition as both a challenge and a learning experience for everyone involved.
He is presently well adjusted and happy , although the challenges faced in
the classroom etc. take their toll ! Our family is pretty outdoor orientated
. We spend a lot of time waterskiing over the weekends . Neville loves being
towed in the tube behind the boat . He has a beautiful sister aged 8 whom
he adores (although he would never admit this ) and who has offered him excellent
companionship.
Reading the articles on the pffd site has been a wonderful experience and
I am sure that through sharing of experiences the road forward will become
more clearly defined .
Neville has a short femoral stump . It was not clear initailly whether there
would be any chance of leg lengthening , and the options of the Van Nes opertaion
and amputation were discussed . I still have difficulty committing to the
concept of amputation or "reversed" feet.
THE FIRST PROSTHESIS
Neville learnt to walk with his "walker" . Amazing how small that first
prosthesis was when looking at it now ! The foot was angled forward so it
didn't stick out too much . Without the walker , he moves around very efficiently
by hopping and every now and then walking on the short leg . The walker's
are solid and were designed to take the weight on the backside to enable
walking in a fairly upright manner without too much strain on the back.
SUBSEQUENT PROSTHESES
Neville has had about 8 prostheses through the years . They have all worked
fine and only needed minor modifications from time to time . The last one
I have lengthened 3 times myself due to cost constraints . ( My medical fund
excluded Neville's condition from my cover ) Prostheses also don't come cheap
in South Africa with all the materials and attachments being imported . The
current exchange rate has made the situation ridiculous.
Currently we seem to be running out of ideas on the prosthesis front , and
Neville has had to cut down on the time spent wearing the prosthesis due
to the discomfort he experiences sitting for long periods . There has also
been mention of some back pain .
THE BIG DECISION
When Neville was about five , the orthopaedic surgeon detected development
of the growth plate on the hip and slight growth of
the femur. Talk turned to the possibility of fusing the femoral stump to
the hip , with the possibility of future leg lengthening . After a few more
consultations it was decided that this was the right thing to do , as it
offered the possibility of stabilizing the hip , and minimizing the
characteristic pffd "rolling gait " in the future.
Pffd I have found to be such an overwhelming condition that emotional capacity
and the capability for rational thought is quickly consumed. Having decided
to operate , we just stumbled towards the appointed date while making the
necessary arrangements .
THE SURGERY
Unfortunately the surgery was not successful , and left me in the kind of
state where about all you can manage to do is put one foot in front of the
other !
The doctor operated twice and Neville was immobolized in the traditional
body cast. Neville bounced back exceptionally quickly. I was very scared
one night when sleeping in the hospital and he became incoherent due to the
pain killers .
At home Neville had a low square platform with a fully castoring wheel on
each corner and was soon hurtling around the house in characteristic style.
At this stage one believed that when the cast was removed all would be well
and I told Neville this . Cast removal day arrived with high expectations
and humour . It turned out , however to be one of the most devastating days
of my life when the x-rays revealed that the fusion had become displaced.
RIGHT NOW
Neville has reached a stage in his life where the reality of the situation
is hitting home. I am not sure at what age people with pffd fully understand
what is different about them , but Neville will probably carry emotional
scars from the dilemma of the current situation.
His schooling has suffered a bit , although he continues to achieve excellent
results . He nevertheless has a smile on his face and is happy with his lot
. I've learnt to take events one day at a time, and hope that we will be
able to learn from others experiences and that they may gain something from
ours.
Graham Wright