Botox and muscular dystrophy... Need advice from a neurologist, plastic surgeon, MD, DO .... Anyone

Thank you for your question.  You may wish to contact the University of Pittsburgh - they have a dystrophy clinic where they inject Botox.  You are unlikely to find anyone in the local community who will inject you with Botox with your history, however an experienced clinic like Pitts may have recommendations for you and can tell you their experiences.  Regards, Dr. Matt Elias

Hello Tea.Hugger,When it comes to Botox the presence of a neurological disorder makes the procedure much more risky.  Since you are unable to open your mouth, there are several muscles that may be contracting and limiting this.  I would agree with one of the other responders that you are unlikely to find someone in the community to inject you.  There may be clinical trials or clinics specific to muscular dystrophy at medical universities that may be of benefit.  And there is no guaranty that an injection would be able to allow you to open your mouth.  If your muscles have become fibrotic (scarred), then even an injection would not allow for a mouth opening but could weaken your ability to chew.  All of this needs to be considered which is why a specialty clinic that treates with muscular dystrophy patients would be the first place to start.I hope this helps and good luck. 

This is a very complex issue. Has your neurologist performed any tests to determine which muscles are giving you the most difficulty? Botox should help if injected properly and into the appropriate areas so this is the problem--you have to know where and the testing will help.  after the muscles are delineated I would consult a board certified facial plastic surgeon with ENT background to see if the injections can help.

Changing
the amount of mouth opening is a complex issue based on the reason
your jaw opening is limited. There are 4 major muscles that affect jaw
position by opening (lateral pterygoid) and closing it (masseter,
temporalis, and medial pterygoid). In addition there are minor muscle
groups that contribute. Muscular dystrophy is a group of diseases that cause progressive weakness and loss of muscle mass. And Botox is a medication that causes temporary weakness in muscles. Together there is high potential that your mouth opening could get worse. Even without muscular dystrophy, injecting the muscles involved in opening and closing the mouth is complex. I understand why your local doctors have been hesitant.They are looking out for your safety.