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| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) |  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF! Your illness as you know, is rare. Im not sure how much help we can be to you. Our members are oral cancer (OC) patients/survivors and caregivers. We are not medical professionals and rarely know much about other less serious illnesses unless they are directly related to OC. As far as the surgery you are facing, it may be very different than what OC patients go thru. What works for a cancer patient could be drastically different than whats needed for someone without cancer. Only medical professionals would know about this sort of thing. I know this is not something patients without cancer can see but you really are very fortunate your tumor is not cancerous!!! Ameloblastoma info
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | |
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