Selective Dorsal Rhizotomy Information Required!

FluffyK81

My daughter is 3 years old and was diagnosed with CP last April. We have recently heard about the procedure Selective Dorsal Rhizotomy (SDR) and that it may now become available at selective hospitals in the UK on the NHS.

I am looking for information of people that have had this procedure and if they would recommend it, pros, cons etc. I can find some information on it but it all comes from the States and I would really like to hear from those in the UK.

I know it's a very expensive and irreversible procedure so need to know as much facts as possible before any decisions are made. I know other options are available as well so will look into them all.

Rocky

SDR is a surgical technique in which the spinal cord in the lumbar region of the back is opened and nerves causing spasticity (tight muscle tone) are identified and either divided or cut. The aim is to reduce spasticity and enable children to walk or walk more easily. It has been performed at the St. Louis Hospital in USA for over 20 years with good results on the whole. Until a few years ago it was only available in one hospital in the UK but surgeons from the UK have now been to the USA to learn the less invasive technique and it is now offered in some of the major hospitals in the UK.
Your daughter is quite young for SDR - it has been shown to be most effective on children age 6-12 with spastic diplegia (a type of cerebral palsy where the muscles are tight in both legs). I think in the UK the doctors like to try other treatments such as Botox before suggesting SDR particularly on younger children.
SDR involves major surgery and must be followed up by intensive physiotherapy for anything up to two years. It can also be very expensive - approx. £40,000 or more in the UK (including physio) and even more than that if you go to America. NHS England have withdrawn funding but are currently accepting about 100 children onto clinical trials to test the effectiveness of the surgery and these children will receive NHS funding. For more comprehensive information on SDR, please look on the Scope website and please talk to your child's hospital consultant about the treatment and whether it would be beneficial for your child.
NICE (National Institute for Clinical Excellence) have also published guidelines around SDR.