Immy finds her feet

The Operation

SDR (Selective Dorsal Rhizotomy) is surgery that can give children affected by certain types of Cerebral Palsy a whole new life.  Imogen has never taken an independent step, and suffers from severe stiffness and reflexes in her legs that make it very hard for her to control her limbs.  When she tries to walk her legs cross over and her body closes in on itself, so, while she can sit independently and stand with some support, taking independent steps has always been impossible for her.  The surgery will reduce the stiffness and improve her coordination.  It cannot heal the damage to her brain, nor will it be sufficient on its own to help her reach her full potential – the surgery will be followed immediately by intensive physiotherapy, and she will need to work very hard to develop strength and control in her muscles.

Dr Park in St Louis, Missouri pioneered SDR over 20 years ago and therefore has the most experience. He is selective about who will benefit from this surgery and therefore has a 100% success rate. A hospital in Bristol, has recently started carrying out the same procedure, but the demand for the surgery is high, and hence eligibility criteria are tighter and funding is not approved in Wales at the moment.  Since Imogen is six it is important that she has the SDR surgery as soon as possible: it will reduce the likelihood of needing regular orthopaedic surgery as she grows.

We need to find £40,000 pounds for the surgery, flights and accommodation in the USA for the weeks of follow-up physiotherapy.  If possible we would like to go in early summer 2012 so that we have the warm summer months outdoors to do the intensive work afterwards. After receiving all the information on Imogen, Dr Park wrote to us and said that he “strongly recommends” that she has the surgery.  In his letter he described the expected benefits – and they are better than we had hoped for.  After this operation, Imogen has a good chance of walking using a walking frame and there is some chance that she will be able to walk with crutches.  This would be a dream come true for her!

And so we have joined the hundreds of parents who are trying to get their children to America to have SDR, performed by the world’s leading expert, with the aim of improving their lives forever. We cannot do this alone, and so our friends and family have joined us in trying to raise the funds necessary to take Immy to America to give her the chance to live her life more fully and give her better control of her limbs.  We can’t deny her this opportunity to “find her feet”.

SDR – what is it?
At present, Selective Dorsal Rhizotomy (SDR) is the only surgical procedure that can provide permanent reduction of spasticity in cerebral palsy. It results in improvements in sitting, standing, walking, and balance control in walking.
SDR involves cutting some of the sensory nerve fibers that come from the muscles and enter the spinal cord. One spinal root sends information to the muscle; and one spinal root transmits sensation from the muscle to the spinal cord.
In the operation, the neurosurgeon divides each of the roots that transmits sensation into 3-5 rootlets and stimulates each rootlet electrically. By examining the responses from muscles in the legs etc., the surgical team identifies the rootlets that cause spasticity. The abnormal rootlets are cut, leaving the normal rootlets intact.This reduces messages from the muscle, resulting in a better balance of activities of nerve cells in the spinal cord, and thus reduces spasticity.
Different surgical techniques are utilized to perform SDR. Neurosurgeons typically perform SDR after removing the lamina from 5-7 vertebrae in order to expose the nerves. However, Dr. Park and his team were concerned about possible problems that can arise from removal of such a large amount of bone from the spine. They refined the technique and currently remove the lamina from a single vertebra.
The other layers of tissue and muscle etc. are sewn. The skin is closed with glue. There are no stitches to be removed from the back. Surgery takes approximately 4 hours. The patient goes to the recovery room for 1-2 hours before being transferred to the intensive care unit overnight.
Early SDR, at 2-4 years of age, can prevent the development of deformities. For this reason, we favor early surgery. Also, SDR will reduce deformities and makes it easier to treat deformities later with orthopaedic surgery.
For more in formation about SDR and the surgeons who perform it, you can take a look at the website of the St. Louis Children’s Hospital in Missouri.