I have had a small pin size hole in my mouth develop and when I went to the dr they treated me like a circus freak-telling me that I was a one in a million adult that had a cleft pallet develop. They actually would call the nurses and other drs into check it out. I was told me a highly recommended specialist that there was nothing to do about it but the good news was that it would not could not get any bigger. Well, the hole is now the size of the entire roof of my mouth, I have no sinus cavities any more, I have constant drainage of thick green stuff that includes anything that I put into my mouth, I have ringing in my ears, severe headaches that would make a migraine feel like a mosquito bite, pain in my neck and facial areas, hard time swallowing, and besides the severe constant pain-I have to put up with everyone thinking that I am retarded because I have lost most of my speaking abilities. I have had to put up with this for 2 yrs trying to find answers and seem to be getting no where fast...or at all for that matter. I would love to meet a real dr house-this would be the perfect case for him...but since we all know that is impossible...I am up for any advice you might have!
Re: Where can I turn when no one has the answers?!?
I know a wonderful Dr who deals with problems like yours. He is an orofacial surgeon that specializes in cleft lip, palate, and other head/neck treatments and is quite an artist at making devices to close gaps and holes and fill in missing pieces. He is at the University of Nebraska in Omaha, Dr Jeff Markt. If you can travel to see him, I think you'd be very pleased. He works with a team of physicians, so if any surgical treatment is required, that could be done there as well. Good luck-I truly think you can be helped. It is unfortunate you have not found someone locally who knows what to do for you. Worth a trip to Nebraska!