I went to my NS last week in Vancouver and I apologize for not updating sooner. I don't really know what to say about it. I'm not really upset b/c I didn't expect much. It's more that I am just fed up with the fight. The attitude of the docs up here is ridiculous. I am really just stunned by their unwillingness to consider anything new that research is proving.
The good news is my syrinx is unchanged from last year. I also got a SSEP and EMG test ordered which will help rule out peripheral nerve causes and also help prove the tethered cord theory. This is the extent of the good news.
The bad news is that he does not believe in Chiari zero or occult tethered cord. He believes Dr. B made these things up to make money. No amount of discussion would even slightly change his mind. I talked about my brainstem being elongated on my MRI in NY and he countered with a neuroradiologist doing his own measurements on me and coming back with everything normal.
When my husband and I asked...well, what do you think is causing all of these complex and debilitating symptoms....he said We don't know and don't understand these things very well yet. We may never know....chuckle chuckle. I am just floored. I went and found the answers to these questions from the experts and he is completely unwilling to accept any of their findings. If I hadn't gone out on my own and gone to TCI I would have never been dx with what I have and been able to find strategies to help improve my life. For instance it was TCI that first dx me with POTS and the beta-blockers have really helped. They also were the ones to suggest urodynamic testing and sure enough I have nerve damage to my bladder.
If I had listened to him last year I wouldn't have known any of this and would have been in much worse shape. I was basically told last year that there was nothing to be done, just go home and learn to live with your symptoms. It's just beyond frustrating. I don't feel mad or depressed I just feel disbelief. How can it be that they admit they don't know what is causing all my brainstem and lower spine problems but when I seek out the answers from one of the worlds experts the answers are completely dismissed.....I just don't get it.
Oh, he did say he will do a shunt operation for me when my syrinx is big enough......gee thanks......Rather than addressing the cause and preventing syrinx growth we will wait around until it grows enough and destroys enough spinal cord to warrant a risky sugery to insert a shunt. By the time the shunt is warranted my symptoms will be a lot worse and will be permanent. Great plan.
OK, enough sarcasm. I am putting this one behind me, getting my tests done and on to the next doc. I'm going to get a referral to another NS in Vancouver that trained at Toronto Western with Dr. Tator. I don't know if this a good thing or bad thing but we'll give it a try. thanks to everyone for all of your prayers and good thoughts, I really appreciate it and it helped me stay calm and focused during my appointment. Slowly but surely I am moving forward.