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#138299 08-18-2011 12:03 AM
Joined: Aug 2011
Posts: 1
JAbbott Offline OP
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Joined: Aug 2011
Posts: 1
It is 2:00 a.m. and I can't sleep distressed that my husband's post treatment oral health has taken a dive in the last 4 months! We knew he would experience loss of taste and dryness of the mounth, but slowly his jaw has gotten painful and infected, tongue has become paralyzed and he has difficulty swallowing. He was referred to an oral surgeon who wants to do a mandibulectomy and create a new mandible from his leg bone. We are advised that he runs the risk of having a permanent trache and feeding tube, and we are struggling deeply with whether to do this or not. Please help us.

JAbbott #138300 08-18-2011 12:29 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Welcome to OCF! Im sorry to read about your husbands health problems. Its never an easy decision to do major surgery. Unfortunately this is your decision to make. I can give you info to help guide you and make it easier to decide.

I am going to guess at the history here. Your husband has gone thru radiation 4 months ago for oral cancer? Where exactly was his cancer? Was anything implanted that is causing the infection? Is he being treated at a cancer center? Have the doctors suggested hyperbaric oxygen treatments (HBO)? It makes it so much easier to help knowing more background info. Pleasse take aminute and add a signature. Click on the "My Stuff" tab then click on "profile". Scroll to the bottom and type in the white box. This will greatly help!

Ive had a mandibulectomy. It is not an easy operation to go thru or to recover from. It takes many hours. I also know that jaw pain is enough to bring a grown man to his knees! Most people who go thru a mandibulectomy stay about 2 weeks in the hospital. You can specify a possey muir valve trach so he can talk. A feeding tube would be a necessity for this surgery. I am almost 2 years post mandibulectomy and yes I do still have the feeding tube but not the trach. I only needed the trach for when I was in the hospital. I just cant eat enough of a balanced diet to free myself from the tube. It is NOT the end of the world to live with this. Everyone is different when it comes to going thru a big procedure or any treatment for that matter.

From how you worded your post, it sounds like without the surgery your husband will be terminal. Does this mean he is having a recurrence or just the infection is very bad?

Get a second opinion. Weigh out all the options and pick what works best for his situation. If it was me, I would get the surgery and have a chance at a decent life. Better to have a chance than give up before you even try.

Best wishes with this difficult choice.


Christine
SCC 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 smile

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