Hi all
Sorry I haven't posted here much lately but I thought I'd fill you in on the details of our latest hospital appointment and ask a few questions (as always)
As you will be aware, over the past few weeks we have been becomming increasingly worried about Alisons balance and coordination problems, though we are extremely thankful that her hand is now recovering from a flare
That said, for the past 10 weeks the hospital have forgotten all about her leg and basically passed off the balance and coordnation problems as a confinece or psychological issue
Over the past week Alisons underlying pain has increased and I expressed my concerns to the hospital about the need to revisit her medication and to look at the coordination problems more closely
Yesterday I noticed that the physio had slightly changed her opinion about the cause - stating that it may now be as the result of some "protection" mechanism that is currently out of Alisons control (Your thoughts please ???)
Basically the physio said that because the whole of the foot apart from the heel is painful, as soon as Alison goes to put the heel to the floor, the protection mechanism makes her leg shoot outwards to avoid contact with the floor
I can see some of her thinking behind this but why does this not then happen when she places pressure on the leg to stand for transferring, or when sitting
She basically said the diagnosis was really scary and this was possibly the trigger point (Again have you heard of this ???)
Basically, as a family we all know the exact trigger point - it was the bier block (guanethedine) carried out on the 4th July, though noone will believe us. It seems too much of a coincidence for there not to be some link to the coordiantion and balnce problems we are now seeing
Alison walked around the hospital on crutches for the 4-5 days before this was carried out - and really long distances at times. She even walked to theatre. The problem became apparent the minute she attempted to get back on her crutches after the block - her balance and coordination had gone and she just couldn't get moving no matter how desperately she tried.
The hospital still don't accept the block did anything as they have never seen this happen to anyone else - but thats a bit of a lie on their part as Alisons classmate had the same type of block done by the same consultant a couple of months before and her foot turned inwards, she couldn't walk and her leg discoloured (she had to be placed in plaster to get her sorted out and still has a slight deformity to the foot now )
The consultant refuses to accept the block could be a trigger and the physio says its not possible as Alison leg muscles are too strong / rigid and the block should have worn off by now
Looked at a leaflet provided by another hospital in the UK who carry out these types of blocks and they cite permanent or temporary muscle weakness as a side effect !!! Is it possible to have muscle weakness in muscles overworked by dystonia ????
I've also read that it is not unlikely to have strong muscles coupled with severe spasms and cooridnation and movement disorders but try as I might I cannot get anyone at our Pain Management Unit to even discuss this as it always gets dismissed out of hand
Alison has lost all faith in the staff at the hospital and myself and the rest of the family are rapidly doing the same.
Do you think I am right to be concerned or should we stick it out without seeking a second opinion ?????
Many thanks
Andrea