In November of last year, my wife had an operation for a small benign tumour. The tumour was successfully removed but about two weeks after the surgery she had a massive stroke and was left with incomplete Locked In Syndrome.
Locked In Syndrome
Locked In Syndrome is also called cerebromedullospinal disconnection and it really means that she is totally paralysed (quadriplegic) and cannot speak. She has retained slight movement of her eyes and can blink to communicate. Some people with LIS can breathe unaided but most can’t and have to be mechanically ventilated. In my wife’s case, she now has a tracheostomy and the ventilator is attached that way which is much better than when she originally had a tube in her mouth. Most people with LIS cannot swallow as the muscles do not work. She is fully conscious and awake but gets very tired which isn’t unusual for someone with this condition. She is completely cognitively aware of what it going on and the LIS hasn’t affected her ability to think or understand things.
She is fortunate that it is an incomplete Locked In as the prognosis is slightly better than if she’d had classic LIS.
Currently she can communicate by blinking on a good day but she gets very tired and so this isn’t always possible.
She has had some NMES which is a sort of electrical muscle stimulation and it’s had some good effects on some people with LIS. It wasn’t a wonderful success but it has slightly improved things as she can now move her mouth a little bit and slightly move her head. She is also now trying Zolpidem which is normally given as a sleeping drug but doctors have discovered that some patients with a persistent vegetative state (which my wife doesn’t have) and also with LIS can have very good results with Zolpidem. So far it hasn’t really shown any difference but we’re continuing to try with that as it might have some sort of cumulative effect according to some studies.
Locked In Syndrome isn’t easy to describe really. She has full cognitive capacity, so she can think ok, she knows exactly what’s going on and can understand things that are said to her but she can’t move anything below her head (quadriplegic), and even moving her head isn’t great really, just slight movements which might even be involuntary, not completely sure. But she isn’t mentally impaired. She also has some slight sensation in other parts of her body and this is why they diagnosed incomplete LIS.
They say that if a person survives longer than four months with LIS, then the chances are that they could survive quite a long time. She has now survived round about four months and so we’re really hoping that things can improve.
People with LIS have achieved lots of things, there is a French author called Jean-Dominique Bauby who has LIS and he has written a book. A film was made of his book called The Diving Bell and the Butterfly. I haven’t seen the film but it’s apparently very good. I have a feeling it might have a lot of poetic license which would only wind me up so I have avoided seeing it so far.
Occasionally people do recover from LIS. There have been cases where people even recover fully but usually they don’t regain all of their former functions.
At the moment we are just trying everything out there to see if anything works. Maybe something will.
Any suggestions, please mail me. Or, if no suggestions, please just send us lots of positivity as we go on trying to find a way out of this.
Locked In Syndrome Blog 