Back to waiting

If you are a regular reader of the blog you’ll know about my son Jono. He has scoliosis and kyphosis and had a spinal fusion surgery in 2009 when he was 16. He was great for a few years but has been in a lot of pain in recent years. It seems the spine is curving about the rods.

At the moment he’s not able to do very much at all due to pain.  Earlier this year there was the Versatis patch hassle where the health board withdrew the patches from everyone who had been on them previously (unless the patient has shingles). These are patches that contain a local anesthetic, for Jono they enabled him to move around at least. So when they were withdrawn he was devastated. The only way to get them was to appeal to the health board. We heard that no one was successful, I tried a local TD who told me there was no way we would get them. I’m not one to accept no for an answer where the welfare of my family is concerned so I contacted the professor concerned and explained Jono’s situation. We were lucky and he got his patches reinstated.

Jono is still in a lot of pain. He hasn’t been seen by a consultant in over a year. This week he saw the physiotherapist and he thinks Jono’s spine is rotating but until he gets seen and/ or scanned there’s no way of knowing for sure. I’ve been on to Dublin where the consultant is based but no luck. I’ve tried to find out about a Cross Border appointment but I’m being told that scoliosis isn’t covered.

We are also waiting for an occupational therapist to come out and hopefully is that happens we’ll be able to get Jono a wheelchair so I can at least take him around the shops and maybe even up to Dublin. He used to love going out and about but really isn’t fit to do it at the moment.

So once again Jono is playing the waiting game.