It’s been a couple of very hectic days and my stress levels aren’t the better for it but I’ll get through it. There was a EuroSpine public conference in Dublin yesterday and I went along to see if I could find out anything that would help Jono.
For those of you who don’t know Jono was diagnosed with Scoliosis and Kyphosis when he was 8 years old. He spent years being monitored under the hospital in Sligo. During this time he was getting more and more curved. A back brace was tried which was ill-fitting and caused more pain. The consultant would tell Jono to take two paracetamol and lie down.
It was only when I found out from the Internet that he should be seen in Our Lady’s Children’s Hospital in Crumlin that he finally got referred. At this stage his spine was now almost 100 degrees curved and was affecting so much of his life including his digestion and breathing. Surgery was essential but of course there was a huge waiting list. The Daily Mail were running a Campaign against the Scoliosis cutbacks and they heard about Jono’s situation, to cut a long story short I firmly believe that without them he wouldn’t have got his surgery.
The surgery was done in 2009, Jono flew through it, he was only in hospital for 6 days including the day of the surgery. He grew 4 inches during the operation and now has spinal rods in his back….but…the rods were just from his waist to the base of his shoulder blades and he’s now curving above the rods. This April the consultant said there were two options left – pain numbing injections to try to stop the constant pain Jono is in or a further surgery to extend the rods.
Jono has been getting through each day with pain killers and Versatis back patches…..but….the back patches have now been withdrawn for patients except those with shingles. So this has us very frustrated and Jono distraught. So yesterday I went to see if I could find out anything for Jono’s situation at the conference. I didn’t to be honest, I got to ask a question but was quickly cut off due to time issues. I could have stayed longer at the end but would probably have missed the train home and I’d plucked up so much courage to speak up that when I was told to stop it knocked my confidence and of course they can’t comment on individual cases.
I’ll cover what information I picked up at the conference in another post as I’m well aware this is turning into a book.
Good news though (hopefully). Today Jono was seen by Chronic Pain Management Clinic in Sligo. They said his muscles are in spasm so he had several injections of local anaesthetic into the muscles and we are hoping they will work. We were also told that if the GP writes a letter to the HSE and explains the situation that he should get the patches back. So fingers crossed these injections will work and that Jono will finally get some relief. He’ll still have to go for physiotherapy but he goes there on a weekly basis anyway and he’ll probably have to start exercising in a swimming pool again. He’d had a break from that because he was just in too much pain.
As always I’m amazed by how brave Jono is. I saw him getting the injections and he didn’t say a word. I, on the other hand, came out a quivering wreck and had to go for cake and a coffee (thank you Margaret x).
We’ll let you know how he gets on and if there is any improvement with the injections.