So I may be wrong in saying this so sorry if I am, but most
people who have FA (friedreich's ataxia) have Scoliosis too.
Scoliosis (from
Ancient Greek:
σκολίωσις skoliosis "obliquity,
bending")
[1] is a
medical condition in which a person's
spine
is curved from side to side. Although it is a complex three-dimensional
deformity, on an X-ray, viewed from the rear, the spine of an individual with
scoliosis may look more like an "S" or a "C", rather than a
straight line.
Scoliosis is typically classified as either
congenital (caused by vertebral anomalies
present at birth),
idiopathic (cause unknown, subclassified as infantile,
juvenile, adolescent, or adult, according to when onset occurred), or secondary
to a primary condition.
Secondary scoliosis may be the result a
neuromuscular
condition (
spina bifida,
cerebral
palsy,
spinal muscular atrophy, or physical
trauma), or syndromes such as
Chiari malformation.
Recent
longitudinal studies reveal that the most
common form of the condition, late-onset idiopathic scoliosis, is
physiologically harmless and self-limiting.
[2][3]
The rarer forms of scoliosis pose risks of complications.
I do have Scoliosis and I have 2 curves in my spine one at
the top which curves to the right and I have a curve in the bottom of my spine
which curves to the left, so my spine indeed is like the letter “S” or a snake.
Back when I was 18/19 I was seeing the spine specialist doctors up in Southampton
and one day they said my curves had hit their peak, and they said if you ever
get any back pain then you need to get in touch so we can see what’s going on.
Well that time has come as I am getting bad back pain in the left lower part of
my back which I believe that’s where one of my curves are. I’ve had the back
pain for a few weeks now but I haven’t said anything to anyone but I told my
mum last night and we are going to get on the doctors tomorrow, so we can see
the right people and see what’s going on in my back. You see ever since I found
out about having FA (friedreich's ataxia) and then hearing I had Scoliosis, for
most people who have Scoliosis it ends in having surgery. And I have always
been scared to death of this surgery,
Surgery for adolescents with scoliosis is only recommended when their curves
are greater than 40 to 45 degrees and continuing to progress, and for most
patients with curves that are greater than 50 degrees.
Unlike
back braces, which do not correct spinal
curves already present, surgery can correct curvature by about 50%.
Furthermore, surgery prevents further progression of the curve.
There are several approaches to scoliosis surgery, but all use modern instrumentation
systems in which hooks and screws are applied to the spine to anchor long rods.
The rods are then used to reduce and hold the spine while bone that is added
fuses together with existing bone.
Once the bone fuses, the spine does not move and the curve cannot progress.
The rods are used as a temporary splint to hold the spine in place while the
bone fuses together, and after the spine is fused, the bone (not the rods)
holds the spine in place. However, the rods are generally not removed since this
is a large surgery and it is not necessary to remove them. Occasionally a rod
can irritate the soft tissue around the spine, and if this happens the rod can
be removed
.
Just like how I have dealt with all other FA related things
in my life I will cross that bridge as and when I come to it. I am 25 now soon
to be 26 and I’m sure I’m not the only FA person to feel this way but sometimes
I feel like I’m a 89year old man and my body is falling apart on me. Maybe the
next steps in my life are to have more surgery, who knows, I will know more
when I see the right people, until then I’m just going to keep on trucking :-).
