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Pete D #114895 04-01-2010 07:00 PM
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Thank you all for this post and the answers. I pay more attention here than I do at the Drs and very interested in your answers to each other. Nice work all.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Pete D #114897 04-01-2010 07:07 PM
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Pete, you understand it correctly. You are usually way ahead of me in the technical things.

Maybe HBO would be something that would help your wound heal. This time, Ive had 16 dives and see progress. Maybe its a combo of the wound care specialists, HBO and the IV antibiotics. Who knows, but it is working.

My wound is about the same size as yours but it tunnels along the top jawline into my mouth. My wound specialists have me put collegen in the hole. What are you putting in there to help it heal? My ENT doesnt want to do surgery, says it really isnt an option for this area. After what you explained about the blood vessels, now I understand why. After the problems the docs had with my jaw surgery, I am lucky to only have this issue.

So happy for OCF when these problems arise. We can put our heads together and figure this out. Then we can go to the docs armed with knowledge.

As always, wishing you well. Have a happy holiday w/ your little critters smile



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
Joined: Nov 2005
Posts: 1,128
Pete D Offline OP
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So far, no treatment except the antibiotics. Mine starts below the lower jaw and emerges in the upper throat. Actually, nothing was showing on the outside until the abscess developed and my PCP lanced it with her trusty scalpel. Everybody said it smelled terrible so sometimes not being able to smell is a good thing.

It's still suppurating small amounts of pus, plus there is a clear or blood-tinged fluid coming out, in addition to the tissue granulation, so I don't see it healing anytime soon. Actually, that's better because I can observe it from the outside, whereas looking in my throat would be very difficult.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Pete D #114937 04-02-2010 06:55 PM
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You do keep it covered with a bandage, right? Do you put anything else on it like antibiotic cream? Once you get wound care specialists involved, you would be amazed at all the different bandages, ointments, healing aids and creams there are. The one bandage they used on me was a $9.50 bandaid. Wow, they were so nice and cushiony, but I couldnt afford them. Now I use gauze pads and a special tape.


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
Pete D #114938 04-02-2010 06:57 PM
Joined: Nov 2005
Posts: 1,128
Pete D Offline OP
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Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Pete D #115573 04-16-2010 09:33 PM
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Posts: 1,128
Pete D Offline OP
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Went to see the Doc again today and the infection is definitely responding to the antibiotics.

The outside wound has not only healed over, but has become convex, indicating all the pus, etc., is gone. The inside wound is also healing and granulating (Didn't realize it, but I can actually see it despite some trismus; lots higher in my pharynx than I thought. Both ends can be seen on my most recent CT scan on March 12th.

The plan is to continue the higher-dosage antibiotics and check in every couple of weeks.

The real concern is how close it all is to some major blood vessels, but looking at the CT scan was reassuring to all because it's not as close as suspected. Doctor held the probe stick to several places on and around the inside end and could feel no pulsing from the blood vessels.

My current concern is my limited range of motion, presumably caused by the swelling, but it may also be from not moving it much in the last six-eight weeks. The pain levels remain high; am using a Fentanyl patch, plus Oxycodone when that's needed.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Pete D #115660 04-19-2010 08:18 AM
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Pete,

So good to read that your wound is looking better and that the antibiotics are helping. We were back and forth to Clark's doctor for a non healing wound so I know how difficult this is. Your range of motion may get better as things quiet down. Keep us updated on your progress.

Anita


Anita (67)
CG to husband, Clark, 78,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia, PEG 7/21 still recovering
Joined: Jun 2007
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Thats good news, Pete. Its so hard for a wound to heal in areas where radiation has been given. Im happy to hear it is responding to the antibiotics. Hope your pain starts to get better soon, glad you have everything you need to manage it.


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
Joined: Nov 2005
Posts: 1,128
Pete D Offline OP
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Joined: Nov 2005
Posts: 1,128
I was using the Fentanyl 25 mcg/hr patch and it was just too much, together with still occasionally needing the Oxycodone (The Fentanyl works on the background pain from the entire head/neck area and then I need to Oxy to nail the ear pain, which the Fentanyl doesn't touch) and that was too high for me -- I was kind of in Zombie Mode, just drifting along and unable to read. I cut back the F to 12.5 mcg/hr and so far that's working much better.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Pete D #115943 04-25-2010 10:14 AM
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Posts: 700
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Pete,

Fine tuning for pain relief is truly an art. Sounds like you have it dialed in. I hope you are at least feeling somewhat better and that the wound healing continues in the right direction.

All the best--
Anita


Anita (67)
CG to husband, Clark, 78,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia, PEG 7/21 still recovering
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