I am starting this blog to track the progress of Will during our quest to get him to America.
His dad, James and I have been umming and ahhing over the operation.
Currently his treatment is basic, well for us anyways! He wears
these splints he has a walking frame. Walking far isn't really an option, so he also has a chair which he push for him. He has been referred for an Active User chair, this is one where basically the wheels are further forward on the frame, and its easier for him to push himself independently. He gets tired quickly, tho I find its quicker if hes bored ;)
Alongside the splints and frame, Will also has a
standing frame, which basically supports his legs and holds him in a standing position whilst his hands are free to play or do whatever. He uses this daily at school, but since its the holidays, we have it at home now.
Everyday we have to carryout 3 lots of stretching exercises, it takes about 20mins. Now that he is at school part-time, we find that we only get to do them twice a day. Hes not a great fan of doing them, but needs must! We find the more he does, the stiffer his legs get,and the stretches are meant to undo the stiffness.
Ages and ages ago, we found out about an operation called Selective Dorsal Rhizotomy (SDR). We mentioned it to Wills then Orthopaedic Consultant, but he said it wasn't an option. Fast forward a few months and Will's Orthopaedic Consultant changed over to one based at Gobowen, this was because he goes to a Welsh school, has a Welsh NHS physio etc, and it meant everyone was singing off the same page.
The last appointment we had was with a registrar in place of his consultant and he mentioned something about the SDR, and Will being a suitable candidate, but in the UK, the procedure is very different, more invasive and there is a longer recovery.
Will's dad and I have been looking into self-funding it. It is done in the states, in St. Louis Children's Hospital.
I have borrowed the below from the
Scope website:
What does the surgery involve?
Selective Dorsal Rhizotomy describes a surgical procedure carried out to the lower vertebrae usually between L2 – S2 (lumbar and sacral area). The vertebrae are opened to reveal the spinal cord which contain the neurones of the central nervous system. These neurones (bundles of nerve fibres) channel messages between the brain and different areas of the body.
Electrical stimulation is used to identify and sub-divide sensory and motor nerves. This process continues until the specific nerves and nerve roots affecting the spastic muscles and which may not be “transmitting” properly are identified and cut. Due to the size of the nerves and rootlets, this is a very precise procedure and therefore the surgery can last several hours and requires a general anaesthetic.
and more importantly the risks, according to British sites are as followed, again from Scope.
Risks and possible problems
It is important to remember that this procedure is irreversible and involves major surgery so we would strongly advise parents to consider very carefully whether or not this is suitable for their child and talk to the medical professionals involved in your child’s care. Not all patients with spastic cerebral palsy will benefit from SDR and some patients will see no benefit or even deterioration in their condition following surgery.
Side-effects can include: - severe pain after surgery (58%)
- unpleasant feelings in the skin (40%)
- constipation (20%) and urine retention
- experiencing increased spasticity during times of stress months or years after surgery (40%)
- weakness in legs
- dislocation of joints.
% figures based on study of 250 children who underwent SDR (2)
Discouragement in the patient, due to the long follow-on process, has also been reported.
SDR can highlight weaknesses elsewhere, for example, where muscles working alongside the spastic muscles have adapted to compensate for the increase in muscle tone.
However,
St. Louis Hospital basically says it is a 100% success rate with no complications.
Now, as a mummy, how do I make that choice? I cant help but be cynical and think that the American site (st. Louis) ultimately out to make money, so are going to play the positive card. We (Will's dad and I) have both joined a Facebook group where people who have either had the procedure, or had children have the procedure post. They are all singing the praises, one woman even said she didn't look at the risks!
It is so so hard to know what to do. As it stands Will is a happy, chatty little boy who is, albeit unconventionally, mobile. If things were to go well, it could improve his life, no end! If it were to go wrong, it could substantially decrease his quality of life!
