| Hasn’t
spina bifida been virtually eliminated? |
|
|
The incidence of spina bifida has dropped
dramatically and quickly over the last decade due to improved
ante-natal detection and decisions to terminate pregnancies.
However, the numbers of persons with spina bifida who, due
to improved surgery and management, are reaching adolescence
and adulthood in ‘good shape’, is increasing. They
need support from well resourced health professionals, particulalry
in continence related areas.
|
| What
are the key primary care issues in spina bifida? |
|
|
As spina bifida emanates from a neural tube
disorder it is an evolving disease involving multiple organ
systems. Routine surveillance must involve regular review of
the neurological, urological & musculoskeletal systems.
In summary, incontinence in spina bifida is due to a neurogenic
bladder and bowel requiring careful surveillance of neurological
change. Go to Chapter 1
for more information. |
| Why
the need to focus on incontinence in spina bifida? |
|
|
Urological complications of spina
bifida are a major cause of morbidity and mortality in spina
bifida. |
|
Why is continence management
so difficult in spina bifida?
|
|
|
Continence
management requires routine and vigilance. Most people with
spina bifida also have hydrocephalus which is associated with
subtle and often elusive cognitive deficits, such as: poor time
management, visuo-spatial dificulties, passivity, poor abstract
reasoning and planning. Hence the task is more complex and time
consuming. Health professionals must be aware of this and intervene
appropriately, or progress will be slow. Go to Chapter
2 for more information. |
| What
is spinal cord tethering and what has it got to do with urological
complications? |
| |
Spinal
cord tethering (the cord adheres to scar tissue at the level
the lesion has been repaired) is an insidious and common cause
of worsening incontinence. Clinicians need to have a constant
suspicion of this syndrome and seek intervention early. If not
treated early any lost function may be permanent. Go to Chapter
3 for more information. |
| What
are the key elements of the neurogenic bladder in spina bifida? |
| |
These
are summarised clearly for you, along with the critical role
of urodynamic studies, in Chapter
4. Understanding the type of abnormal bladder function is
the key to successful continence control. |
| What
are the basics of urological monitoring in spina bifida? |
| |
•Assess current and past urological history
•Review past renal investigations
•Annual creatinine, urine microscopy and culture tests
•Annual renal ultrasound
Why? See Chapter
4 for brief reasons.
|
| What
are the basics of urinary continence control? |
| |
See Chapter
5, to find out about:
•CIC- clean intermittent
catheterisation, which has revolutionised care and underpinned
independence
•Some drugs which assist, especially
anticholinergics
•The wide range of surgeries which are performed, and
are briefly explained
•Adults who had a urinary diversion
performed as kids, who can be undiverted, and move onto a
CIC routine
|
| What
are key elements in controlling faecal incontinence, constipation,
and bowel dysfunction? |
| |
See Chapter
6, to find out about:
•The importance of diet and routine, and
the ‘long haul of bowel training’
•The role of suppositories, microenemas, and bowel wash
outs
•The huge promise of the simple, reversible Malone procedure,
which allows for
•Antegrade bowel emema via the appendix, and which offers
a great filip for independence
|
| What else do I
need to know? |
| |
Genetic counselling is important. Dealing
with impaired sexual function is a great challenge, and if
not dealt with effectively can cause enormous loss of self
esteem. Role models in the community via Spina Bifida Associations
work very effectively. There is specialist help available,
but it is very scarce, and the Manual is one of the few places
you will find the adult spina bifida expert contacts.
|
| Email
us your questions. |
