| | Joined: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | OP  "OCF Canuck" Senior Member (100+ posts)
Joined: Sep 2013 Posts: 105 | My Husband Stephen has asked me to post these questions:
Swelling inside my mouth & around my jaw is as bad or worst then 3 months ago( the end date of my treatment)
My mouth is still soar and sensitive.
does the pain subside once the swelling/scaring has done its course?
Looking for any sign of hope for some sort of normal, or any suggestion which would help. I am diligently doing my neck and mouth stretches twice a day as well as yoga once a day.
Look forward to hearing from anyone about this because the physicians in Canada either don't know or aren't saying, thanks Stephen
husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | A mandibulectomy can be a difficult surgery to recover from. So many variables can make it hard to relay an accurate timeline. Plus we are not doctors with years of medical training and hands on experience. The patients general health, age, their diet, and many other things all play a part in how long recovery will take.
Swelling can take an entire year to completely subside. Its hard to guess at what point the swelling should be reduced at 4 months post surgery. Any time swelling increases months after surgery, the doctor should be notified and the patient checked out. Maybe it could be fluid build up?
Pain unfortunately can be a long term problem. One medicine that worked very well for me was neurontin for nerve pain.
Im sorry you are struggling with your recovery. I know all too well how difficult the recovery form the mandibulectomy can be. Its full of ups and downs and it can get very frustrating when not seeing significant progress. Best wishes with your continued improvements with your recovery.
ChristineSCC 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  | | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | The neck dissection can also cause a build up of lyph fluids causing swelling and likely more pain. Once he has a clear scan it might be a good idea to start gentle lymphatic massage to help reduce swelling. As Christine said, this is a pretty big surgery, most of the rapid tissue healing is done within the first 6 weeks - but in reality it takes a lot longer to fully heal. Hugs.
Last edited by Cheryld; 05-07-2014 07:34 AM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | | OP "OCF Canuck" Senior Member (100+ posts)
Joined: Sep 2013 Posts: 105 | Hello Chritine & Sheryl
Its a pleasure to be able to communicate my concerns with people that have experience it, its very difficilult to communicate with doctors. Its only through others relating there experience that I can understand my own process with efficacy.
It means a lot to get this kind help from real people that have had this real experience otherwise I would be in the dark.
all the best and happy camping from New Brunswick Canada, Stephen | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Always happy to be of assistance, Stephen!
You hit the nail on the head... when the doctors office closes or just doesnt quite "get it", our forum steps up and lends a hand with spot on advice and support.
Hang in there, things really will get better in time. Im very sorry it takes so long. Ive been there and know how much recovery from this type of surgery stinks.
Good luck!
ChristineSCC 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 | | |
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