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#128761 01-29-2011 12:53 PM
Joined: Sep 2010
Posts: 4
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Joined: Sep 2010
Posts: 4
im currently in physical therapy for limited range of motion in my jaw. yesterday i had a ct scan and my ent dr informed me i have necrosis of my jaw so now i have to stop pt and get picc line for home iv antibiotic therapy the infectous diesease dr prescribed anti biotics that have cause alot of pus to leak out my left ccheek at graft site! now i have a hole in my cheek but all jaw pain is gone? they say i could have had infection for almost a year has anyone ever experinced this?


Stage 4 buccal mucosa with lynphnode involvement radical forearm free flap surgery 7/09.radiation 35tx and cisplatin/erbutux chemo 4 tx peg tube for 8 months peg removed revision surgery four surgeries for trismus 4 picc lines for ORN of mandilbe now in HBO Tx still fighting the good fight!!!!
Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Yep!

I had a tunnel that ran along my top cheekbone with an open hole under my ear.. This was from having a major surgery which removed my lower jaw. Then the free flap failed and had to be redone. So somewhere between the 2 surgeries, the tunnel developed. It took almost a year for the tiny hole that was the start of this tunnel to heal. I went thru the picc line with IV antibiotics along with a visiting nurse for about 9 months. Mine was infected too, for a few months. Ive had a wound vac attached to the wound below my ear for about 2 months. I even did 40 hyperbaric oxygen treatments (HBO) to help heal the wound. After radiation these things happen and they are very stubborn to heal. Its now a year and a half post surgery and I am still struggling to completely heal this tunnel. Wounds must heal from the inside out. I also take some high protein powder daily to boost my protein intake. This also helps promote healing.

It may be a good idea to check with your doc about doing HBO. That is done for healing problems like this. The picc line is no big deal, I had mine for what seems like forever. The IV meds can be a bit of a pain taking them 3 times daily. But you must do this in order to be healthy. My infectious disease doc was one of my favorite doctors. She was smart, helpful and kind.

Get some Glad Press and Seal to use to wrap your picc line site arm so you can take showers. If the picc line ever gets clogged and you cant take your meds, call the doc who can put some special saline rinse in it to clear the line.

Sorry you are going thru this. I know its a real pain to deal with this. Best of luck with everything.


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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