I just got back from vacation in the smoky mountains in TN. which was fabulous and relaxing and then ended my trip at Vanderbilt with my facial therapist, exercises and botox. I asked the questions that have weighed heavily on my mind this entire time but didn't ask because I didn't want to hear the answers.
Q- Is synkinesis something that eventually goes away or is it here to stay......forever?
A- It is something that you will have forever but with therapy and botox we can control it to the best of our ability. The facial nerve was damaged and while regenerated it made a few bad turns hooking up to the wrong muscles in the face. That can't be changed.
Q-So once I retrain my facial muscles this isn't a permanent fix?
A-No. It is just like fitness training. Once you stop you can lose everything you gained. You will have to always do these exercises to keep things in check.
Q-Do you think that the facial nerve can recover any after the 2 year mark?
A-I believe that anything after the 2 year mark is pushing it. I believe it is pretty much done but then you have to focus on strengthening the muscles that did get reinnervated.
Q-What do you think about the new device the Orbex that is waiting on a patent before making it available on the market?
A-I believe that it is very similar to gum chewing and can't focus on the small/focused movements you need for strengthening and reducing unwanted synkinetic movements.
Q-What do you think about e-stim?
A-There is a lady in England who runs a clinic and she is claiming excellent results with her new method of providing e-stim. I got in contact with her but she was unwilling to divulge much information so it makes me wonder about it. We don't recommend it at all here.
Q-Why is insurance no longer covering my botox treatments. They used to but are now denying treatment?
A-For some reason they are doing this to alot of our patients and are calling it investigational treatment.
Q-What about myofascial release therapy?
A-Yes. I can see where this would be helpful in facial muscles that have not been moving for some time and the fascia around the muscles can tighten down over the muscles making them more difficult to move. I may get trained on this so that I can provide this service to my patients.
Sooooooooooo................not a great way to end a vacation but nonetheless I thoroughly enjoyed my time in the mountains to unwind and to forget about all of this mess.
Also........this is coming from MY therapist and I'm sure that every therapist won't agree and there are exceptions to every rule. I really am finding out that there are ALOT of unknowns with what is considered the proper treatment for facial paralysis and synkinesis and everyone has had different therapies that work for them. I really didn't want to hear that exercises and synkinesis would be FOREVER! She did say that hopefully with time the right muscles will gain strength and the exercises will become easier almost 2nd nature and instead of doing them 3 times a day I could get away with once a day and instead of botox every 3 months I could go longer without the injections so that is promising. I didn't realize that once you retrain the muscles to "act right" i.e. not allowing the mouth to move with each blink that it could come back if you didn't keep up with the exercises.............so it is something that we will battle for a very long time or we just learn to deal with the improper movements. That is a bit discouraging as I thought we could rewire the brain and once we taught it the "right" movements then we were done! Ugh.
Any comments, suggestions, advice or any new information that you guys heard at the meetings in Chicago are welcomed here.............Hopefully it will be better news than this.
Angie
Life is still VERY good.
