SO I went back to Vancouver last week for my SSEP test. This was ordered by the NS I saw in Vancouver several weeks ago and was administered by a doc that he works with. I think he is a NL although I never actually quite figured it out.
The test wasn't painful and wasn't really very useful. My result was normal. Basically, they stimulate your nerve in your foot with a little electrode that feels like a mild buzzing sensation. This buzzing makes your toe twitch. They then place an electrode on your skull which measures if the signal that your toe is twitching is getting to your brain and at what speed.
My signal is travelling normally along the spinal cord which means there is no major disruption. This is good news. I have heard of other folks though having this done in different positions and that certain positions completely changed the signal in those with tethered cord. I think it was touching your toes that was this issue as the tether pulled. But mine was only done laying completely still in bed.
It was fine that the test was normal but then I was given a mini-lecture following by the doc about how Occult tethered cord is a made up diagnosis etc etc. I interrupted him mid-lecture to say that I am only trying to get answers and the BEST quality of life possible. No one in Canada can explain why I am having the symptoms I have so I am seeking out the answers myself to try and preserve my ability to walk, bladder function and prevent further progression of symptoms. That's all.....If all the docs up here say it's not my syrinx but you don't know what it is then of course I am going to seek out my own answers and I'm sure you would do the same. This stopped him from carrying on with the full lecture but it really was not a very useful visit.
I still have the EMG upcoming but this can be done locally so at least I will not have to travel back to Vancouver for that one.