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Joined: Nov 2013
Posts: 2
Mclax2 Offline OP
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Joined: Nov 2013
Posts: 2
Hi All,

I had a benign cyst that recurred several times. I developed Osteomyelitis in the right mandible that I could not get rid of after several months of picc lines, debridements, and HBO dives.

Finally after several doctor recommendations I had half my jaw removed along with the condyle and replaced by titanium plate.

I am nearing 2 months post op and still have some swelling in the neck incision area.

My biggest pain is in the joint. It is never ending. Stiff , tight, sore, and affecting my speech.

I am wondering if any one has had their condyle joint replaced. If so how long did the pain and swelling last?

I have had 3 follow ups and the doctor says the imflammation in the joint needs to decrease and it will feel better.

I was really hoping that by this point post op I would be feeling more relief. Any advice would be appreciated.

Thanks,
James

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
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Welcome to OCF, James! I have not had the condyle joint replaced but have had half of my lower jaw removed. The pain can be horrendous! At 2 months post surgery, your swelling has only partially subsided. Swelling can take a year to completely disappear.

I know how difficult it is to recover from this type of surgery. I used the PICC line antibiotics for 8 months after my mandibulectomy plus did HBO to heal. It was a very slow go for me to bounce back, one full year.

Cold compresses can help the swelling go down. Prescription Neurontin or Gabapentin also works very well for nerve pain.

Best wishes!


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: Oct 2013
Posts: 559
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"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Oct 2013
Posts: 559
Likes: 1
Hi James - I have no knowledge about your joint replacement surgery, but I can tell you that you found the best place anywhere for help with this problem. These people are amazing.

Hang in there and be patient. Your surgery isn't a common one, so if anyone else here has had it, it might take a while for them to find your post and comment.

take care

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Nov 2013
Posts: 2
Mclax2 Offline OP
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Joined: Nov 2013
Posts: 2
Hi all,

This forum has been helpful. I recently had a fibula flap surgery to replace my right mandible. I had a benign tumor and an infection that caused me to have this surgery. I am 40 years old and have always been very active as an athlete. I also have a job that requires me to be on feet quite a bit and two young children. I was wondering if any one could give some more long term follow ups on how they have progressed years post op. What to expect, etc Any advice would be greatly appreciated.

James


***ADMIN NOTE***... This member is NOT the type of patient we normally see on our site... they did NOT have oral cancer, their medical history doesnt include OC, they only had a benign tumor and infection complications... nothing like the complexities patients with OC encounter.... that said, without having OC, this situation is too different for any type of comparison.... they do NOT have any of the problems patients that have had OC treatments, side effects and recoveries experience... since our site is comprised of oral cancer patients/survivors and caregivers who are without medical degrees or backgrounds, without the many years of medical school, years of clinical patient experiences, the patients full medical history, plus being over the internet... the patient to examine and ask questions of right in front of us to name a few differences... we are NOT qualified to compare our own compromised post cancer health with that of a person who has never had OC...

BOTTOM LINE..... unfortunately OCF is unable to help this person... this patient should seek alternative resources for patients more similar to themselves or inquire about other more appropriate avenues from their health care team

Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
James,

I’m sorry for your troubles. I had a fibula free flap on my right leg for my left jaw about three years ago. Mine was from osteoradionecrosis of the jaw. I was in the hospital 7 days, but was not walking due to prior disabilities, and that they had to take the artery and vein from my chest to supply my jaw as prior surgeries removed everything there. I went to rehab nursing home for three months, and took awhile to start walking again.

By the the time I left the nursing home I was walking. My leg graft still didn’t heal, so I needed another surgery, and graft to close it, which eventually healed. I had no further problems, but I’m not running around or over exerting myself.

I hope this helps!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs







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