Finally got the bloomin’ ring splints. The darn things are more trouble than they are worth. The EDS splint for the MCP joint is pure torture. I don’t see her ever wearing it, to be honest. I tried it on and I found it incredibly painful and my joints aren’t even sore. Maybe there will be some situation where she will find it helpful, but it hurts – it presses against the ligaments in the front and back of the hand in a really painful way. As far as the thumb splints go, well, I think the upper ring is too small. When we were sizing (and resizing) them we went round and round about which size was best. Initially, we were told that the upper ring should be sized a bit larger to be able to accommodate a splint on the middle joint. Then they said the sizing was all wrong and we made it smaller.
Now she can get them on with a bit of effort, but getting them off is really challenging – painful and practically causes a dislocation. I guess we can work with it for a little while and if we can’t make them work, then I guess getting them resized is the next step. I really wish we had just started with the swan neck splints and been done with it. Hindsight is, as they say, twenty twenty. Add to all of that confusion the fact that Dr. Tinkle said they have gone away from the silver splints for kids and opt for the plastic oval 8s… I just don’t know. And as important as the ring splints seemed at one time, now they are just an annoyance compared to the cervical instability.
The other – more important at this point – piece of hardware we got, is the Miami J collar thanks to Dr.T. Andrew put it on her last night when he brought it home. I had hoped, foolishly, that it would instantly relieve some of her symptoms. Needless to say, that did not happen. It was terribly painful for her and she couldn’t stand it for more than a minute or two. He thinks her muscles are spasming when put in such an unfamiliar position and I suspect he is right.
It appears to fit reasonably well but it rubs/pushes a spot on her spine and the base of her neck and it pushes on the base of her skull which exacerbates the terrible headache. It also makes her incredibly dizzy when she wears it. So, the hope of instant relief was fleeting in the face of reality. We are going to work with her and see if we can’t get her to a point of tolerating it. It isn’t that she was vehemently opposed to wearing it and is just being oppositional or anything. She wasn’t thrilled with the idea of wearing it in front of her friends but I think she had come to a point of being willing to wear it if it would make her feel better. She willingly sat down to put it on last night and give it a try, so I have to believe it is just painful for her to be moved into the ‘correct’ position. Afterwards she tried to tell us her neck was just made like that and we shouldn’t attempt to change it with the collar. Again, she rarely cries but she shed some tears during the short time she wore the collar. I just wish something would go easy for her, just once!
We also got a copy of Dr. T’s report that he sent to the pediatrician. So, we have the diagnosis in black and white. I was going to wait a week or so then call to see if Dr. Black had received the report and request a copy. Don’t have to now. Dr. T is now one of my favorite people on the planet!