HI ALL, case you haven't crossed over, my sorted story is over in the introduce yourself forum : ) basic gist, i have an ameloblastoma, a very rare jaw tumor which is NOT malignant. the only treatment is a maxillectomy and have been meeting with a maxofacial surgeon at HUP. will be removing approx. 3/4 of maxilla, top jaw from farther eye tooth to end of line left with bottom of sinus. long story short, NOT a whole lot of support for those with my tumor out there and NOT a lot of info. the only way i have gotten any advice and information was thru this site, as unfortunately the procedure is done most often for malignancies. i also have to add that i am incrediably grateful to have found such warm and caring people here! it has made such a difference and has provided me so much comfort. did meet with my surgeon again today and scheduled the surgery for july 24th. will have another scan end of this month case there is more growth (good grief please NO!!!) STILL NO WORD still from the other guy (who as some of you know have been waiting on for a second opinion for some time!) now i am getting well, pretty ticked all together. i mean, come on, he could of at least passed me on to someone else if not at all interested! so...ANY SUGGESTIONS FOR SURGEONS WELCOME! am in philadelphia, pa. hoping to find a good referal and really hoping to get into someone's office asap, it would certainly make me feel more at ease. did get one name so far over at jeffereson and calling tomorrow. feel free with any suggestions to my personal email (since names and all) i feel kinda like me and my tumor really belong anywhere. maxillectomies are definitely done more often in the cancer department than my department (maxofacial/dental) but since obviously not malignant i have not been seen there. of course this makes me somewhat concerned to say the least, I mean who wouldn't want to be in the department where they are performed more? the second opinion i have been seeking is from the oral cancer dept, but like said, no avail. my surgeon today did say that he has performed this surgery but did confirm my suspicion that it is not as regularly done in his dept., still feel uneasy (let's face it will feel uneasy anyhow : ) HAPPY THOUGHTS TO YOU ALL AND THANKS AS ALWAYS FOR LISTENING : ) marieka

I sent you a private message with some info.

AWESOME DAY - HORRAY!
DID GET MY APT WITH THE LONG AWAITED SURGEON I HAVE BEEN SEEKING (many of you know who i am talking about!) After much contemplation and stressing I emailed like the best letter of my lifetime to a different assistant than whom i have been calling (and getting nowhere). It was a GREAT letter, even with some added flattery (but of course) what do they say, catch more flies with sugar (mmmm, something like that) couple of hours later his assistant calls and immediately puts me on the line with HIM! he gave me i suppose a lame explanation regarding "conflict of interest as we are related", which was all like i said lame. face it, out of common courtesy, could have easily just refered me to one his collegues in ontarhio WEEKS AGO! a few minutes later, sort of flustery like, he stated he was putting me back thru to his assistant and to tell her he wants to see me. i thanked her of course for forwarding my email to him and she stated that she was not sure what happened, felt it was unexcuseable and was scheduling me asap. SO IT IS THIS WEDNESDAY MORNING! i am SOOO RELIEVED! i was just feeling very ill at ease with my surgeon (especially this week when he agreed that maxillectomys are handled much more regularly in the other dept). i also did not like that i asked him if i needed another CT to check for new growth, as it is over a 2 month period from first one to surgery date. he stated yes and wrote the script, BUT I KNOW that if i hadn't said it, he wouldn't have ordered it... in any case, whether second-cousin once removed, top 10 doc guy does it or not, i know i will be getting a very good and much warranted second opinion - finally....
THANK YOU ALL FOR YOUR EMAILS AND SUGGESTIONS (especially WILCKDDS, it was a pleasure talking to you this evening : ) off to get the kiddies to bed (and me too, at least smiling a little this time : ) marieka

Marieka, That's great news. And I don't see what the heck is wrong in making contact with someone that can help you with a second opinion through a family connection. Like you said, if he doesn't want to operate on a family member he could always refer you to a colleague. Good for you - I am sure you are very relieved!

Nelie

THANKS ALL : ) longer update under my other posts in introduce yourself but wednesday went great and re-scheduled my surgery with a much better surgeon who we truly feel comfortable with! i appreciate everyones input, suggestions and referals - YOU ARE AWESOME!!!!