Sep 03, 2008 - 3:45 pm
I haven't been on the site in a very long time. I am looking for someone who may have some additional information for me. I have had surgery twice (left and right) for carotid body tumors. I have a tumor again that is on the left side. I carry the SDHD gene so I knew this was a strong possibility. I also have a tumor near my parathyroid. I have been seeing several surgeon's and endocrinologists and luckily my labs have been coming back within the normal range. The surgeon is not very happy with the idea of surgery due to the fact that I had nerve damage during the first surgery, as well as scar tissue (now). He has presented me with the idea of radiation (Cyberknife). Help!!I don't like either option, but I have been dealing with this for the last 6 years and now I am having some pain and nerve involvement from the growing tumor. Does anyone have anything more to add, maybe something that I have missed. Because these are so rare, I have a hard time finding anyone who knows much about them. I have already emailed and discussed this with the University of Pittsburgh. Any information would be beneficial.