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#148242 - 04/14/12 03:34 AM Final report on my necrosis issue
Dragan Offline
"OCF Canuck"
Platinum Member (300+ posts)

Registered: 07/02/06
Posts: 445
Loc: Regina Saskatchewan, Canada
I've been back from my last trip to the cancer centre in Calgary for a couple of's taken me a while to summon the...I don't know...interest? motivation?...I'm struggling to find the right word.
In earlier posts, I outlined the issues I've had for the past two years with an area of necrosis in the side of my skull from radiotherapy. After all this time, I had high hopes that this latest trip would be the culmination of this latest "saga"...that the Doc's would have a date set for surgery, and we could get on with things.

"Hopes"...perhaps "pipe dreams" would be more appropriate. I'd had one last series of scans done in the past three months of a variety of flavors; CT, MRI, iCAT, x-ray, bone scans, etc. get the "picture". All intended to full quantify the extent of the necrosis and finalize a plan.

The intention was to remove the necrotic area, install an appliance in the void, repair the damage to my middle and inner ear from the bone spur, etc.

What the scans showed dashed my hopes. The area of necrotic bone is simply too large to address surgically. without complete absorption of the appliance edge fitting, it would simply be a disaster waiting to happen. One bump, any sort of trauma, even something as simple as biting something the wrong way could cause catastrophic failure with almost certain fatal consequences.

In short..the surgery is simply too dangerous to even consider. As an added bonus, the issue with my TMJ was also "quantified". My TMJ on the affected side is virtually destroyed by a combination of rads and arthritis. We've been discussing what to do with that problem as well; removal of the joint and placement of a feeding tube, fitting an artificial TMJ, or simply leaving it alone.

That choice has also been made; we have collectively been concentrating on the left side since that's where the cancer was, and all of the treatment occurred, all of the pain was centered, etc. We hadn't looked beyond that...we should have.

The scans showed that the problem with my jaw wasn't confined to the left side...the right TMJ is "problematic" as well. It hasn't really caused a great deal of pain...well, it probably has, but the pain meds I've been forced to take to deal with the necrosis and the left TMJ pain have masked the problem. The right TMJ is virtually fused due to arthritis as well, so I've gone from being a candidate to have an artificial joint implanted, to NOT being a candidate for anything.

They will not attempt a bilateral TMJ replacement due to the current catastrophic failure rate of artificial TMJ's. The only option open surgically is to remove both sides, reassemble everything for cosmetic purposes, put in a permanent PEG and call it good, or simply leave everything alone and treat it symptomatically.

To say I'm "discouraged" is a rather large understatement. "gutted", "appalled","devastated"...they would all work fairly well.

the pragmatic side of me says this is just another hurdle to be overcome or accomodated. The pragmatist in me says "at least it's not a recurrence"...the emotional side of me tore one of my Doctor's a new body opening when he made that same comment to me during our consultation. I am sick to death of hearing that...NO, it's not a recurrence...but the problems I'm having are a LOONG way from being inconsequential in comparison.

To be honest, I don't know what I'm going to do, or what options I have, if any. My cousin ( he's the oral surgeon in my life and has done numerous surgeries in the years since my diagnosis)forwarded all of my charts, scans and test results for the past 36 months to a former colleague who is now at the Mayo Clinic to get another opinion.

He heard back from him yesterday...they concur. There is currently nothing that can be done surgically that is safe and that will offer any meaningful improvement in the current situation.

So...that's it. For the forseeable future, anyway. As much as I detest the very IDEA of even one more pain pill, or anti-inflammatory, or steroid, or???...that's what I'll be doing...eating more pills.


SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06

#148249 - 04/14/12 08:21 AM Re: Final report on my necrosis issue [Re: Dragan]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9435
Loc: PA
Im so sorry to read your latest post! Im at a loss for words. The horrible after effects just never stop, do they? Hope you can find some relief for your pain. I will keep you in my prayers.

Wishing you all the best.
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

#148253 - 04/14/12 08:44 AM Re: Final report on my necrosis issue [Re: ChristineB]
Gabe Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Registered: 08/02/07
Posts: 1301
Loc: Sydney NSW Australia
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

#148258 - 04/14/12 10:39 AM Re: Final report on my necrosis issue [Re: Gabe]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Dragan - I was so sorry to hear of the latest diagnosis in your treatment. I hope the pain management can bring some relief to you. I wish there was something I could say that could help. I guess I'm just a "never-give-up" kind of person, but I am still really hoping for some kind of magical turn-around for you or something yet undiscovered that could make everything better. Just know that you have people here who really care about what is happening to you.
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)

#148260 - 04/14/12 12:22 PM Re: Final report on my necrosis issue [Re: Anne-Marie]
davidcpa Offline
Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida

Wish I could come up with an answer.

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

#148268 - 04/14/12 01:54 PM Re: Final report on my necrosis issue [Re: davidcpa]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Me too... I did hear Recently about a face transplant for a gunshot victim, I'm wondering if a dor scull... Or part of it is a possibility - I haven't yet seen my SO but I will print off your letter see what he says. I'm to see him Monday, my appointment was last week but he was called into an emergency surgery. Hugs... There's always hope.
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

#148269 - 04/14/12 02:01 PM Re: Final report on my necrosis issue [Re: Cheryld]
AnitaFrances Offline
"Above & Beyond" Member (500+ posts)

Registered: 09/25/09
Posts: 695
Loc: Media, PA
Oh, Wayne, I am so sorry that you are feeling so dejected. Like Cheryl, I am an eternal optimist. I had sent you a PM a week ago. The offer still stands. I wish there was more I could say to make you feel better. Remember, that you are NOT alone.
Anita (62)
CG to husband, Clark, 73,
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

#148270 - 04/14/12 05:05 PM Re: Final report on my necrosis issue [Re: AnitaFrances]
sallyanne Offline
Supporting Member (50+ posts)

Registered: 08/06/11
Posts: 78
Loc: New York, NY
There are no words. I am so sorry!
Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11

#148274 - 04/14/12 07:33 PM Re: Final report on my necrosis issue [Re: Dragan]
julieann Offline
"Above & Beyond" Member (500+ posts)

Registered: 06/24/09
Posts: 875
Loc: Alabama
Hi Dragan:
Sorry to read your latest news, but there just has to be something that can be done, and we'll find it if there is. Go to the Forum Search bar (top right) and type in EzJim, and send him a PM asking if he has any suggestions. He has recently had some jaw problems similar to what you are experiencing, but not as bad, and may be able to give you some ideas as to where/what to do, go, for evaluation. Please don't give up - and we'll all try to ask/check around to see what we can come up with. Know we are with you.
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile

#148276 - 04/14/12 08:09 PM Re: Final report on my necrosis issue [Re: julieann]
julieann Offline
"Above & Beyond" Member (500+ posts)

Registered: 06/24/09
Posts: 875
Loc: Alabama
Hi Dragan:
In re-reading some of the older posts, I see you are more familiar with EzJim and some of the older posters than I, so my suggestion wasn't very good. I will, however, keep searching, along with others, for anything that might be done to help you, and also ask my doctors. I'm going to Vanderbilt University Hospital, Nashville, TN. next week, for problems I am having, and will check out their facility for possibilities.
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile

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