The SPML surgery is something that we have been looking into lately and still collecting information at this stage. SPML stands for Selective Percutaneous Myofascial Lengthening, which basically means Percutaneous Muscle / Tendon Lengthening. It’s not a new type of surgery, it’s been around for about 30 years and percutaneous lengthening is being done by quite a few doctors in America. However, this type of SPML method was developed by Dr Nuzzo who is one of only two doctors performing this type of surgery in way that is slightly different and less invasive than the traditional way. The SPML procedure is done under a general anaesthetic (takes about 1 hour) and involves the treatment of spasticity and releasing tight bands of tendon. The word “Percutaneous” in the name SPML means making very small skin incisions (instead of cutting it) so no stitches are needed. After the surgery Cayla would have some serial casting to her legs/feet which have to be on for about four weeks. These type of casts are not like the once we are used to but thinner and more flexible with the toes free. Think they might be called ‘walking casts’. After four weeks we would see an AFO specialist (Dr Jordan) in New York to receive custom-made specialised foot splints for Cayla. She will have to wear these AFOs daily for about a year and after that not at all or possibly a couple of hours a day. Each child is different and will therefore need different things. You can find more information here and here.
I know that there is not ‘quick fix’ to Cayla’s cerebral palsy as it is neurological but if we were to travel to the US and do this type of surgery she wouldn’t have to go through Botox injections and serial casting twice a year and probably not have to do a full tendon release before she starts high school. This is what the plan looks like at the moment for Cayla. She will get her twice yearly botox injections but after a few years she won’t have the same (or no) results anymore and still be looking at some type of surgery which is from what I understand a lot more invasive that SPML. As much as I can see that the Botox is helping Cayla I am still not convinced that it’s a great method long-term. I have read through the doctor’s websites, read hundreds of posts on American forums and have so far only heard good results from happy parents around the world in regards to SPML. A family from Perth is in the US right now and their daughter has just had SPML done so it will be interesting to hear their experiences and see the results once they are back. Very interesting indeed but will of course be fairly costly. The surgery costs about $10,000, the specialised AFOs about $3,000, plane tickets $10,000 plus physio therapy, accommodation, food etc…..
But would it be worth it…?