In 2010 I underwent a major surgical procedure that required the use of anaesthetics. Before I was admitted to hospital I put together a factsheet abouot Myotonia Congenita based to a large degree on the information that this website offers. As a result of this a lot more thought went into my medical care.

I am undergoing the same procedure on my other foot later this month. I went to my pre-surgery assessment yesterday during which we talked at length about the problems that MC can give rise to and our problems with anaesthesia. This proved very productive, in fact I have been called in to speak to the anaesthetist who will be looking after me during the surgery. This is the first time that this has happened to me in a long history of medical care!

Since becoming more assertive with the medical fraternity I am finding that their attitude is changing towards me. The nurse who assessed me yesterday got very interested in the myotonia and I know that she flagged the potetnial for me to be an anaesthetic problem up on my admittance notes, which is what has resulted in my being called in for another assessment.

I should mention that since 2010 I have discovered that my past medical history actually does include several instances of adverse reaction to anaesthetics; a fact that was never previously revealed to me.

The fact is that Myotonia Congenita is a relatively rare condition and that many of the doctors and nurses that we may meet have very little, if any, knowledge of it. It is up to us to educate them. Fortunately it seems these days that they are more approachable and more willing to listen; certainly in my case.

If you need further medical attention, whether it is to do with MC or not, I would recommend that you use all the information you can get your hands on to help influence how medical people go about your care and this site is a great place to start!

Type of Myotonia: Becker's

Country: England

Peter,

I had an op many years ago and was unaware of the issues wrt Malignant Hypothermia. Main problem I had was when coming out of anasthetic I couldnt spit out the tube they inserted down my throat. Not sure exactly what happened as I was still barely concious but I did survive. Do you know if you had same issue wrt spitting the tube out when you came around ?

thanks

Kev

Country: England

Hello Kev,

intubation, the act of passing the tube down the throat, has always been an issue with me; I've woken up previously with sore throats as a result. That said, I've never woken up from a general anaesthetic still intubated.

I only leanred about the associate anaesthetic problem recently even though it is included in my medical file, the first instance being when I was a child.

Type of Myotonia: Becker's

Country: England