Thank you for accepting me to this group
My wife Paula was diagnosed with Chiari in May of 2013 after being initially diagnosed with MS by her GP. An MRI scan showed she had a herniation but slightly more worrying was that her spine was falling apart just below her skull
In September 2013 Decompression surgery was performed along with a fusion of the spine ( I cannot remember the technical name of this procedure)
6 months down the line and the symptoms were no better, little use in the left and side of her body, difficulty to walk any distance, poor balance, tiredness, pain, suicide headaches etc etc.
Having seen the consultant again and taken a second opinion with a respected specialist in the UK Graham Flint it was decided that the two of them would re perform the surgery with Graham Flint performing a removal or reduction of the cerebellum tonsils. As far as we are aware this surgery went as planned and Paula had two MRI scans post surgery. I have to bear in mind that there is quite a lot of metal work on the back of Paula's head which is holding the spine together as part of the fusion.
The surgery was performed on the 11th November and Paula came home 10 days later, and this is where I am in the dark. The post operative care from our system in the UK is not good.
I am worried about the pain and discomfort Paula is in, she is taking some medication, Naproxen twice daily, along with codeine and Paracetamol. She has the option to take a liquid based morphine, but this makes her terribly sick and has stopped doing so.
My worry is that we have gone through this whole thing twice now and I cannot see any improvements, the headaches are constant and she can barely walk to the bathroom. Sleep is difficult and every night around midnight the pain becomes unbearable for her and her legs go in to spasms, the only comfort she can get is from a very hot shower.
Any guidance would be welcome, or will things get better over time
I look forward to hearing from anyone.