Originally Posted by earmom

My son also has over 100 clicks per minute in each ear. Acupuncture didn't help him either. Botox didn't provide relief from the pain, but the clicking did subside (but is not completely gone). He did get popping after the Botox and it is very painful.

I have the medical papers on the procedure done in Turkey. (Google Turkey and Palatal Myoclonus) The paper is titled, "Radiofrequency Ablation in the Treatment of Idiopathic Bilateral Myoclonus: A New Indication" by Omer Aydin, MD; Mete Iseri, MD; Murat Ozturk, MD. Any ENT should be able to pull the study for you if you can't access it on the internet. I will tell you that the process permanently fries the palate and based on the study our ENT said he would never try to follow it. He said that too much data was missing and there is no follow-up to that paper. My copy is very light but I am happy to scan it and email it to you if you provide your email address. It looks like it is from 2006.

Currently, we are going to meet with someone about trying CFR (Cranial Facial Reconstruction). It sounds crazy, and I have no idea where this will lead me, but I have already spoken to one person who has had it done and who got great relief from the pressure this disorder creates. Check out *edit link* I am not promoting it because we haven't tried it, but we are looking into it. And anyone with this disorder knows that you have to try everything you hear about. Keep in touch. Never loose hope!

Originally Posted by earmom

Oops...so sorry...correction FCR stands for functional cranial release NOT CFR mentioned earlier. My mistake.

Originally Posted by earmom

We tried FCR, functional cranial release in March, 2013. We watched this doctor slow the clicks and heard them stop!!!! This is not a cure, but it is the best thing we have tried to date. My son only clicks now when he swallows, yawns and sneezes. He still has pain but not all the time. THis procedure was done by Dr. John Lieurance. He works will all kinds of movement disorders. You can witness some of what he does by looking at clips on u-tube by looking for palatal myoclonus. We also recently became aware of a FaceBook page for PM suffers. It is an active web link with lots of information. If you suffer from PM, you might want to join that group and try FCR. It was a miracle for my son. WE have a long way to go, but we are now headed in the right direction.