From the age of one to four Michael saw specialists in Grand Rapids, forty-five minutes from our home. Our specialist at the time wasn’t very encouraging. He wasn’t enthusiastic about therapy. When I spoke to him about different techniques I had heard through therapists, support groups, and research he ignored them.
Then one day I heard of a relatively new procedure called a Selective Dorsal Rhizotomy. A Selective Dorsal Rhizotomy is a lengthy surgical procedure on the back in which nerves that cause spasticity are cut.
Wow was I excited! I could hardly wait for our next appointment to ask the doctor about it. When the time came, I inquired about the procedure with the doctor. It was the first time I had seen him act with the slightest optimism. He stated there had been some success with the procedure and it was a possibility but I needed to go out of State for surgery.
I called my insurance company and learned they would cover the surgery, but only if it was done in State. The University of Michigan performed the procedure and it was about 3 ½ hours away from our home.
I called the hospital to ask questions about the surgery. Imagine my shock when the actual doctor called me back the same day and spoke to me for half an hour!
He explained the surgery in detail. At that time there was a waiting list. I believed they performed the surgery one or two times each week. To be most effective, the doctor believed the rhizotomy should be performed by age four and Michael had just turned four. From everything I had told the doctor, he thought Michael sounded like a good candidate and wanted to meet him. The appointment went really well and surgery was scheduled.
The decision to have a Selective Dorsal Rhizotomy performed on your child should not be taken lightly. It is a difficult time and takes a huge commitment from all family members. It is painful and family must be committed to physical therapy or it will be for nothing.
As a mom, you hope you are making the right decisions for your child, but there are all of these ifs. Every child is different, every situation is different, and each situation needs to be evaluated on their own merit. I questioned my decision many times over before and the first months after surgery.
Michael had physical therapy every day for the next two years. He cried almost everyday when his legs were stretched. It is not easy. The end result for Michael? He had a lot less spaticity in his legs. He was able to move much easier. Before surgery, he could not reach his feet to put on shoes, sit in an upright position correctly, or move his body easily, now he can. His quality of life changed for the better and he became more independent and began to use arm crutches.
Parents who are contemplating this surgery for their child need to keep their expectations realistic. This is not a miracle fix, but those looking to make mild to moderate improvements and improve the quality of life for their child, should discuss this option with their doctor.