To reiterate from the last post, CP is not curable. Treatments help to optimize what Ben can do with the body he has as well as help to manage the spasticity (tightness) in his legs. The two main management treatments that we have done are botox injections and serial casting. Both work for a while, but are not long term. In Ben's case, we're lucky to get a month or two of effect. Then he goes and grows again and we're back with really tight muscles again.
Soon after Ben was diagnosed with CP (he was diagnosed a week after his first birthday), I read about a surgery called Selective Dorsal Rhizotomy ("SDR"). From what I read, I could already see that Ben might be a candidate for this surgery.
To understand this surgery, you need to first understand that Ben doesn't really have anything wrong with his muscles. Really what is wrong is that his brain doesn't send the right signals to his muscles.
Very basically, a neurosurgeon will selectively cut a number of sensory nerve fibres that enter Ben's spine from his legs. The surgeon will test the nerve rootlets to determine which ones cause the spasticity and only those will be cut. The surgery can take up to 8 hours.
After the surgery, the spasticity in Ben's legs will be gone. Hopefully he will be able to get his heels on the ground (currently he is very high up on his toes...basically as high up as a ballerina is) and he will be able to stretch his legs straight out without a bend in his knees.
However, because Ben has been dealing with very tight muscles since birth, his leg muscles have not developed properly (and neither has his joints). So after the surgery, he will be very weak and will not be able to do what he is able to do now. He will need to relearn how to roll and sit and stand and "walk".
The recovery is very intense. He will need to remain on his stomach for 2 days after the surgery. After that, he will be allowed to lay on his side. Eventually he will be able to be on his back again.
The surgery itself will occur at Montreal Children's Hospital. From what I am told, the surgery will be on a Wednesday or Thursday. Ben will have a number of pre-operative procedures earlier that week. He will remain at Montreal Children's Hospital for 5 days. After that, he will be transferred to Montreal Shriner's Hospital. This is where he will have 6 weeks of rehabilitation.
Now you're wondering what we can expect from this surgery. You're wondering (and likely hoping) that this will mean that Ben will be able to walk.
Well. That's difficult to say. We know that there will be improvements. Perhaps vast improvements. But it's hard to know for sure. Of course, independent walking would be wonderful. Beyond wonderful. But we're not sure if that is realistic.
My hopes for this surgery is that Ben will be very functional with forearm crutches. My hope is that this will be his PRIMARY mode of getting around. My hope is that he can walk independently indoors. But I'm not sure if that is likely out of doors. Regardless, Ben will not come home from Montreal able to do all these things. This will take months, if not years, of therapy and work on Ben's part.
I am in touch with a wonderful mom whose little girl, Nina, had this surgery just 6 months ago. Nina was very similarly affected to Ben. She now can take steps independently at home. To me that is amazing progress.
Remember though. Steps do not mean independent/functional walking. Ben will never walk like you or I. That is not the point of this surgery. The point of the surgery is to do everything possible to allow Ben to be as independent as possible.
To read the full details of SDR, click on the link below:
St. Louis Children's Hospital