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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 | Im very sorry you are facing this type of surgery! Ive been thru it and to be perfectly honest, its not an easy surgery. It can be anywhere from a few hours up thru 10+ hours in the OR. It is very intricate and complex procedure. The doctors can only guesstimate the length of your surgery. Until they get in there they wont know exactly what is required. Most important thing is to remove the dead bone before it gets worse.
There are other options besides taking a piece of leg bone. Other ways are thru a titanium plate or using a piece of cadaver bone.
Have the doctors discussed the Marx Protocol? Its hyperbaric oxygen treatments (HBO) 20 prior to and 10 after the procedure. This helps to avoid osteoradionecrosis.
Ive met several survivors who have had this procedure. Some patients bounced right back and its not noticeable at all. Others have become disfigured. Im one of them. That can be a very difficult thing to mentally conquer. This is more of the exception than the rule, so please dont panic and start worrying even more. The added stress is not helpful to any patient. Just remember, you are still going to be the same person no matter what you look like on the outside. Even with being disfigured, I have a busy life helping others and speaking to children about the dangers of using tobacco.
I would advise you to prepare to take care of your affairs for at least a 2 month window. Set up friends and relatives to stay with you while you are in the hospital. You may not be able to speak, you probably will need a trach. Ask specifically for a possey muir valve trach to make speaking easier. Most patients Ive seen go thru this are in the hospital for at least 10 days to 2 or 3 weeks. Expect drains and staples.
Recovery can be a long one. Ask the doc to assign 2 different pain meds both while in the hospital and for at home. This way if you are in pain, you wont have to wait for a certain time to get relief, you can switch back and forth between the 2 meds. You will need a caregiver to help you at home. Ask if the hospital has visiting nurses or if you would need to go to a "step down" facility for a while before you are up to going home.
Im the type of person who is very honest about what to expect. I hope I have not added any more things to be concerned about by my honesty. Prepare for the worst and hope for the best. Read and educate yourself to help prepare. Using the words either mandibulectomy or osteoradinecrosis in the search field to read posts related to what you are going thru. There have been many threads on each subject.
Good luck!!!
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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