Well, I have been researching and researching what the problem could be. I sent my MRI to Dr. Freidman at House, as he said he would look at it for me. He said it was a deep lobe salivary gland tumor. He thought Dr. Chen could recommend someone here in the east to remove it. Through my research, I have discovered, that although they think it is benign, they do continue to grow and can turn into cancer. So it definetly has to come out. The biggest problem right now is finding a doctor with a lot of experience doing deep lobe surgery. It's not enough that I got another tumor, but it has to be a difficult one. It is quite deep in the parotid gland, behind the facial nerves. So once again, it is a possiblilty of facial nerve damage. I'm not keen on the first doctor I saw, as he did not seem to be too interested. I saw someone Friday closer to me in Morgantown, WV. I liked him and his PA, but he admitted that he has not done deep lobe tumors. If he had a lot of experience, I would have gone with him. So it was back to more researching. After about two or so weeks of reading the Internet, I finally found a type of forum for salivary gland tumors. Many people have listed their experiences and talked about their doctors. A couple of the ones mentioned were mentioned also by the Morgantown doctor. I am looking into a few in Pittsburgh. One of the doctors was recommended by a doctor in Alabama and one person said 4 other doctors had recommended this doctor. Several practiced together at UPMC. I thought maybe I could interview 2 in the same day since I'm 2-2 1/2 hours away. The office said that the insurance would not cover this since they work in the same office group. So I asked for this highly recommended one and found out he is not taking new patients, as he is semi-retired. So I asked for my second choice and will be seeing him this Thursday. His name is Dr. Kim and I read about him from one patient who wrote on the forum. He said that he had a very difficult deep lobe tumor that had spit into a Y. He stated that this was such a problem that he should have had a lot of nerve damage. Dr. Kim and his team worked 4.5 hours and saved his facial nerve with only a few severed ear nerves. So I will be gettting Dr. Kim's opinion. On this past Saturday, we had our West Virginia Acoustic Neuroma Support Group meeting. Our speaker, an audiologist recommended a doctor in Charleston (WV) who I may interview also. It has been stressful, first trying to find out what this mass was and secondly, trying to find a qualified and experienced doctor.
Sorry this is so long. I just had to get it all out. I hope I can get this taken care of soon.
Sandy
