| Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | OP "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | I was back in Calgary last week for another MRI, trying to find a solution for my ongoing problems with my TMJ and left ear.
Since surgery in 2006, my TMJ has deteriorated to a point of almost no function due to arthritis. I have also developed oesteoradionecrosis of the left temporal bone, resulting in bone growth into my middle ear, a ruptured ear drum and constant pain.
I got the results of the consult and MRI today...my surgeon is recommending that I have either a prosthetic joint installed to replace the TMJ, or simply removing the joint completely and leaving a fibrous connection ( permanent feeding tube would be required).
As an added bonus, he is recommending that I have a mastoidectomy and temporal bone resection, with a vascularized flap from my scalp to cover the repairs.
In "Doctor Speak" it is a "rather complex and significant procedure"...translated by my cousin, who is an oral surgeon to mean a 16-18 hour procedure...again.
They want to do both surgeries simultaneously due to the risks of damaging the facial nerve, and I will not be able to have the surgery done at home...there are no Doctors here capable of this level of complexity. I will have to have it done in our old home town, 600 miles away.
On one hand, I look at this somewhat philosophically...I'm lucky to be alive and having to deal with "long term" issues. on the other hand, my surgeon is pretty frank; they have very few patients that have survived long enough to face these types of problems, so much of the work needed is, for lack of a better term, "experimental"...they simply don't know if I will have any significant improvement, or any improvement at all for that matter, either functionally or pain wise.
On the other hand...I'm so sick to death of having one Doctor or another carving my head up like a Christmas Ham, I want to grab two handfuls of hair on my head, give it hard yank and run screaming in frustration into the forest.
Well....that was quite a rant, wasn't it? I feel better now; thanks for reading it this far, and I apologize for having a "pity party" here without sending out any invitations.
I think that right now, I'm NOT going to think about this too hard. We are leaving for a mental health break to the Dominican Republic in three weeks...I think I will put this whole thing on "ignore" until after we return from vacation. Once we return from Holidays, I'll get my head back in the game and get the surgery scheduled.
Rant over...carry on. Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | I am so sorry about all your ongoing issues Wayne. In your place I would do exactly the same� enjoy the holiday (and new grandbaby) and put this in the too hard basket for a few weeks. You know better than anyone that coming here to rant is good medicine and guaranteed to make you feel better. Please come back often for the support of the OCF family and keep us posted on the surgery. Love Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2011 Posts: 267 | You must be so frustrated. I'm sorry that you need more surgery after you've already handled so much.
I hope that you enjoy your holiday and are able to focus on having a wonderful and relaxing time.
Tracy - 33 at diagnosis SCC right ventral tongue Dx 4/11. T1N2M0 1st resection 5/11. Bilateral neck dissection: 2 pos nodes 2nd resection w/graft 6/11. Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11. 3 month MRI and PET/CT all clear. 6, 9, 12 and 24 month post treatment MRIs all clear. | | | | Joined: May 2010 Posts: 224 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2010 Posts: 224 | you have a very good humor,  sorry you are going through this,  Hopefully they figure out a good treatment and it will be your last and you will be able to enjoy life once recovered! Stay strong and keep up the good fight!
25/female at diagnosis Dx;stage 3 SCC tongue 03/25/2010 Surgery 04/13/2010 Trach,ng tube, peg feeding tube Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue. 30 rounds IMRT ended July 15,2010 | | | | 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 | Wayne, sorry to hear about your problems. I can understand how tiring it is to always have to get some type of surgery. Ive lost count on how many Ive had. I wish you all the best with this, hope it goes quickly and is successful. Any idea when you will be having it done? Keep us posted, we are in your corner! 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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