Wizard Report

Went to see my Neurosurgeon on Monday and its only now that I've managed to get here to write an update. As you can read from the previous blog entry I'm not a happy bunny so forgive me for my mood here and the appointment itself wasn't exactly happy.

My Neurosurgeon has moved the goalposts again! We agreed to the surgery in August 2005, NINE months after my last surgery to 'detether my spinal cord' See this website for more information on my condition. It is written by a good friend on mine who has also had surgery and still suffers with symptoms. http://www.btinternet.com/~tetheredcordresources/spinal_dysraphism.htm
So months past and you if you are a newbie to my blog then you need to read my old blog......But anyway it's now EIGHT MONTHS! or just about and my surgeon who told me in August 2005. "Your sugery will take you a year to recover from"; he's now telling me I'm not likely to see any improvement for up to 3 or 4 years!!!Oh for goodness sake, make your mind up man!
His thoughts on why my pain is still deteriorating.......?????....... This could be because air bubbles may have become trapped at the bottom of the fillum (the lowest part of the cord) and these air bubbles cause pain. My NS doesn't want to subject me to an MRI and initially said he'd wait for 12 months. I talked to him about my bladder problems and asked if I should be worried about them? Put it this way - I DID NOT GET AN ANSWER! My NS told me that this is the hardest time because apparently I'm still in the early part of recovery - EIGHT MONTHS? I'm not to give up hope because that's the important aspect and my NS is going to talk to my GP and pain management doc and see if I can have some intensive physio but only if it is with pain management. I have no idea if this will happen? I like the sound of it IF I get good pain control. I wrote to my PM doc 3 weeks ago asking if I could up my MST (Morphine Sulphate) because I'm taking so much breakthrough medication......Still awaiting an answer and no chance of an appointment! Me - Angry? NO! Furious? YES!!!!!

By the time I left my Neurosurgeon, he had agreed that he would do some nerve study studies because they have never been done and should have. No, I have had one done but it was a long time ago. These will be more intensive and also that MRI that I hate so much......Back to Bristol then.

Over and out.