August 3, 2015 3:32 PM MDT
I’m curios has anyone had cricopharyngeal BTX (botox treatment) ? I hve been reading a bunch of more recent studies, that seem to think its not so “last ditch”
August 5, 2015 12:59 PM MDT
I had botox 2 times. The first did not work. The second took months to work. It helped, but i had to do it under general anesthesia which is dangerous for anyone who has MD in general.
I have had many dilations. None have lasted longer than a month. I have stopped for 15, for a few years. I also went to the OPMD clinic and found my md is progessing, now is severe for my age. Ugh1 I have had OPMD 8 years. I am about to give up on all procedures, since I have done most of them except one which is the sling. My family members have had no luck in these.
August 5, 2015 1:39 PM MDT
I’m sorry to hear you haven’t had much luck.
I had a swallowing study done a few months ago; they told me that my weakness is moderate and that I do not need a dilation.
That’s a nice clinical diagnosis, but the people who gave it to me don’t necessarily know what it is like to feel like you are choking, which I do a lot more frequently than their studies would indicate.
Don’t give up hope, though! It seems that Cabaletta and now the possibility of gene silencing are just a year or two away.