Spina Bifida.Spina Bifida is a condition where we physiotherapists form part of a team to support the individual and family - typically over a long period.
In this article, I would like to share my own perspective on Spina Bifida - as well as treatment and management options involving Physical Therapy.
Spina bifada is a developmental congenital disorder resulting in an incomplete closure of the embryonic neural tube Spina bifida in Latin term literally means "split spine. Another name for this condition is Myelomeningocele. Put simply, the embryonic neural tube does not form completely and, as a result, some vertebrae around the spinal cord are not fully formed and remain unfused and open. This opening should not be there.
If the opening is large, a portion of the spinal cord protrudes through the opening in the spinal bones. The opening is a fault, as is the protrusion of the spinal cord. Sometimes, there is a fluid filled sack surrounding the spinal cord. The split in the spine is most commonly seen in the lumbar and sacral areas of the spine and any case that I have been involved in managing has involved one of the two of these areas.
Understandably, many couples are distressed when their child is born and diagnosed with spina bifada - however - modern medicine is progressing every day and can help greatly.
Spina bifada can be surgically closed at birth. The hole that should not be there can be corrected. However, this does not restore normal function to the damaged part of the spinal cord. This means that there will be problems along the way. This means that while the hole can be repaired, the effects of the anomaly cannot be repaired there and then. Unfortunately there is no known cure for the nerve damage arising from spina bifida.
However, surgery and physical therapies can help as the years go on - and in my experience help very well indeed! Early surgery to close the opening in the back has been shown to prevent further complications associated with spina bifada, such as infection. This surgery places all the structures back inside the spine that should be there and closes them in. In my opinion this is a necessity.
So dont wait, just do it!
In conjunction with this surgical procedure, a shunt is often placed in to drain the excess cerebro-spinous fluid produced by the brain as often seen in hydrocephalous (a buildup of fluid in the brain). Hydrocephalous is a common association with spina bifada.
Some patients will require braces on their lower legs and intensive physiotherapy. Others will be wheelchair bound and require intensive occupational therapy. Many will require management of their urinary system with catheterisation which can with age be surgically improved often.
As a Physiotherapist, I usually see patients from 3 years of age onwards. Physiotherapy aims to help in the development of normal movement patterns and muscle function. Along with physio, I also use craniosacral therapy to help the body to harmonise and resolve tightnesss within the muscle and fascial systems. Let me give an example in the following section.
Although physiotherapy and craniosacral therapy help in the overall management of spina bifada it is one of those conditions where, from the outset, results are typically slow. I am currently working with a ten year old called Susan who I have been treating weekly since she was three. It is only now we are obviously reaping the rewards of ongoing therapy. Despite the seemingly slow progress, even her neuro consultant is surprised at the progress that she has made.
Each week, we work on muscle stretching and strengthening exercises and craniosacral therapy to keep everything relaxed and calm. I find that this combination works really effectively. My little patient has leg splints which are in common use for spina bifada. The long term aim, with the work we have done, is to help her function without them! This is not the norm however and many patients require support in their legs for life. So, thankfully, all the hard work is paying off!
Physiotherapy for Susans mum and dad is very demanding indeed. It requires a daily input from them. It takes at least half an hour a day - and it is not easy to find this time with a big family and work commitments. But its worth it!! You need to find a committed, patient physiotherapist who will understand the condition that your child has and make the weekly rehabilitation as much fun as possible. We are out there! Just keep looking until you find the right therapist for your child. That is the key.
If your child has spina bifada they will require regular reviews by orthopaedic specialists to assess their bones and muscles. Furthermore, they will require a neurosurgeons review to assess their nervous system and its development. To top it all they will also need to be reviewed by an urologist to assess their kidneys and bladder.
Regardless of the advice you receive - seek a therapist who you can relate to and will help you over the years. That relationship is an important part of the management of your childs condition. Please dont wait. Seek the advice of experts regularly from the birth date. The location in your spine that the spina bifada occurs will dictate the amount of intervention required. Each level affected may affect a subsequent part. The experts will guide you.
While I cant deny that this is a very serious condition - medicine is improving yearly and so are the means of managing and supporting this condition!
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Further References:The Spina Bifida Association. Is a US based organisation with a healthy number of local chapters as well as excellent reports and a resource directory. Read more about The Spina Bifida Association.
MedicineNet. MedicineNet offers an excellent Spina Bifida article - including illustrations - outlining more details behind the condition.
Craniosacral Therapy. I mentioned CST as an excellent complement to Physiotherapy in the article above. My good friend, Carina Collins, has put together excellent examples of just how CST works. Read more about Craniosacral Therapy
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