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#138207 08-16-2011 04:24 PM
Joined: Jul 2006
Posts: 446
Dragan Offline OP
"OCF Canuck"
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"OCF Canuck"
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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
Dragan #138209 08-16-2011 04:59 PM
Joined: Aug 2007
Posts: 1,301
"OCF Down Under"
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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

Gabe #138212 08-16-2011 05:38 PM
Joined: Apr 2011
Posts: 267
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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.
msmac #138316 08-18-2011 03:26 AM
Joined: May 2010
Posts: 224
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Posts: 224
you have a very good humor, smile sorry you are going through this, frown 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
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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!


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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