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Christine,

How long did that stabbing pain last? Or are you still having it? Clark has been taking Percoset but that really doesn't help with the jaw pain. I will check into Neurontin. He had that during Rads for mouth and throat pain.

Take care,
Anita


Anita (68)
CG to husband, Clark, 79,
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 7/21, 10/22
PEG 7/21
Botox injections
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Anita,

I believe 60 dives is max but I'm in no way an expert. I'll look you up on Facebook...keep your chin up, we're here for you.


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Anita, I'm Eric Statler on facebook www.facebook.com/eric.statler

i just tried looking you up on FB and wound up with 130 matches and none in Media, PA


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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I just sent you friend a request through your facebook page.


Anita (68)
CG to husband, Clark, 79,
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 7/21, 10/22
PEG 7/21
Botox injections
Joined: Mar 2008
Posts: 404
Likes: 2
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Anita

That sounds very similar to the dramas that I was having. The gunk was weeping out from the suture line on a small area of the skin under my chin where the small metal plates are screwed in. The skin was so thin over that particular area of the plate and eventually is became exposed. It was only then that they realised it was the screw and that plate causing all the trouble and not the reconstructed bone or anything else.

Once that plate was removed during a very short surgery, everything improved, the weeping stopped and the skin finally knitted perfectly.

Karen


46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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Hi Karen,

I remember your issue with the small plate. Clark has just the one big plate. They can't remove it but you make a good point about the metal being the cause if the leaking. I agree that this is likely. The PS certainly will have to figure out how to correct this. Thanks for reminding me of the metal thing.


Anita (68)
CG to husband, Clark, 79,
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 7/21, 10/22
PEG 7/21
Botox injections
Joined: Jun 2007
Posts: 10,507
Likes: 7
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Ive had 85 HBO dives so it cant be a max of 60.

I still get that pain and my operation was Aug 24, 09. Every couple weeks I try to not take the nurontin and end up realizing I have it for a reason. I still have the 50 mg fentanyl patch and hydrocodone and oxycodone also for break thru pain. At this point, I only take the last 2 meds if its a really bad pain day.


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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Hi Anita. I'm sorry things aren't going better. Find me on Facebook - Wanda Buchanan Motsko


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
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Posts: 404
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I didn't realise that Clark has one large plate. I remember how frustrating and upsetting it was to have to deal with that weeping and fear of infection everyday. I was on and off antibiotics for several months. The surgery in itself is a battle, let alone any further trauma.

I hope they get to the bottom of the problem and resolve it asap.

Karen


46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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You do 60 , which is the normal, but they can give you more HBO dives. It's up to the Dr in charge of the Hyperbaric Unit.


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
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