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Joined: Jul 2006
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Dragan Offline OP
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Its been a while since I posted about my ongoing saga trying to get the problem with extensive bone necrosis in the side of my head dealt with.
For those that don't recall, or didn't see some of my earlier posts, I've developed a large area of necrotic bone in the side of my head from the rads in 2006.Normally this would likely be left alone because the risks outweigh the benefits, however in this situation, it needs to be addressed.
The necrotic bone has forced shards of live bone to penetrate my middle ear, rupturing my eardrum and resulting in excrutiating pain through having live bone exposed to air in my ear canal, plus the issue of severe hearing loss since the eardrum is ruptured and the canal blocked by this bone.
The problems getting this addressed have been numerous. First, it's a new problem. There is very little documentation on similar issues in surviving cancer patients. With little/no background info, the doctors don't really know what the potential problems might be.
Secondly, the size of the necrotic area is such that they simply can't remove it and call things good. They will have to fit an appliance to replace the amount of bone that needs to be removed, since there will be a mastoidectomy, a temporal bone resection and additional bone plate that will have to come out. Also, the damage to my ear needs to be addressed; repair the eardrum, repair the fistula that's developed, correct the lesion where the bone shard has penetrated my ear canal, etc.
They will emply a vascularized flap from further up, under my scalp to complete this repair.
Through nearly two years now of tests,scans and more tests, they finally "understand" the scope of the problem, for the most part. Now the challenge is to find surgeons to do the work.
Fortunately a random re-connection with my former lead surgeon solved much of that concern. He had left active practice nearly three years ago to pursue research. On hearing about my problems, he offered to don scrubs once again, and put together a team to tackle this surgery. In a matter of two weeks, he'd pulled together a team of four surgeons willing to take on a "risky" surgery...risky in the sense that they have no idea of the long term outcome. "risky" in that failure would be career damaging. "risky" to me. Finally, "risky" to the hospital.
The facility where this will hopefully be done is a teaching hospital and a comprehensive cancer care centre. The operation is "elective" in nature, and because of the potential problems has to be approved by their surgical oversight committee.
That may be the biggest battle to date; they are reluctant to approve something this fraught with risk, and with no previous case-work to fall back on, since it puts the hospital in a potentially liabelous situation.
My lead surgeon was a member of this committee for a number of years, and he's leading the charge, so I'm keeping my fingers crossed that he can pull a rabbit out of hat.
Meanwhile I wait, trying to manage the pain. I've been seeing a pain management specialist for several months since I am increasingly concerned at the amounts of narcotic pain meds needed to keep this manageable.
The last two weeks however, a whole new angle has been thrown into the mix. I'd travelled back to our former city of residence ( another complicating factor; we now live 9 hours drive from where the surgery will be performed) to see one of the surgical team and have another, rather unpleasant test performed. It involved lying on the right side of my head for a couple of hours, where I've developed a pressure ulcer on my ear ( also under treatment for several weeks now) since sleeping on my left side is too painful. I should also add that the TMJ on my left side is completely destroyed by a combination of arthritis and radiation damage; it's also under consideration for what surgical approach may be best...but, I digress.
After two hours of lying on this pressure ulcer, my "good" ear was sore. By the next day, it was very red, swollen and painful. By the following day, I was in the local E.R., ready to tear it off my head just to ease the pain.
Three days in hospital on I.V. antibiotics, a week of oral antibiotics to finally resolve the gram negative infection that had set up in the pressure ulcer. Back to waiting...but not for long.I woke up Sunday to find the left side of my face inflamed and red. By Monday, I could barely open my eye, and my entire face was swollen. Back to the Doctor, back to the E.R., back on I.V. antibiotics, visits with one specialist, more pills.
I see another specialist today, and have another appointment at the E.R. tomorrow morning to see two more specialists, have a variety of tests done including another CT scan and have been told to plan on spending at least the weekend in hospital, quite possibly longer, on I.V. antibiotics. They are unsure of the etiology but are bringing in a dermatologist, an infectious disease specialist and an internal medicine specialist to try to figure out what is going on. I've had so many different ear and facial infections since my initial diagnosis and surgery I've lost count; unfortunately I've also become very tolerant of many antibiotics, so they are having trouble treating them.
So again...I wait. In pain, with the added bonus of my face being so badly swollen I cannot open my eye. I am very hopeful they will have some answers; I try very hard to be upbeat about the situation, but I'm losing ground rapidly on that front and getting pretty depressed by it all.


SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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Good heavens, Dragan - my thoughts and prayers are with you. Try not to lose faith just yet - sounds to me like your surgeon really wants to go to bat for you.


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Joined: Oct 2011
Posts: 805
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So sorry for all you are going through. You are so patient in your writing. I can almost picture myself sitting in front of you while you explain it all. You definitely have a grasp on the situation...if only YOU had the control, huh?
Please keep us updated. I am fairly new to the forums, well, I guess it's been 4 months or so now, so you are new to me!!
I know this is probably not a comforting thought, but you are part of research that's for sure!
Here's hoping all is approved and things are figured out soon!
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Joined: Jul 2006
Posts: 446
Dragan Offline OP
"OCF Canuck"
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"OCF Canuck"
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Joined: Jul 2006
Posts: 446
Kathy
I apologize for being so "absent" from the forums the past couple of years. Life has moved along, many changes...retirement, relocating to another city, our first grandchild, etc.. In any event, enough excuses...welcome! I'm sure you've already discovered what a wealth of knowledge and compassion there is in this place.

I've been one of the lucky ones...I faced the Beast, fought a rather horrific battle for quite a long while, and came out the other side, not unscathed by any means, but alive.

Since my journey began, I've had the chance to experience many amazing things that for a time I thought I'd not see; only through the work of some incredibly skilled medical professionals, my family, and the OCF did I make it through. Sadly, as is all too often the case, I've found that the wheels fall off the system a bit once you "make it"....compared to many, the problems I've had since treatment ended have been minimal until now. Now, I find myself in an uncomfortable position of "guinea pig"...I simply lived longer than anyone expected, and now they really aren't sure what to do with me.

Don't get me wrong; I'm incredibly grateful to be around to complain..I merely find it frustrating when now that I have some serious issues that NEED to be addressed, those same medical professionals have developed a case of "cold feet" for a myriad of reasons, and choose the safest option for them...to do nothing.

Doing nothing for me simply isn't an option; I don't believe I would be here today had I elected at any point to do nothing. I was SO pleased when my old surgeon re-appeared in my life..he's very irreverant, very talented and incredibly committed to HELPING people, regardless of politics, legal considerations, or whether or not he can afford to buy a new car this year.

He bullied, cajoled and shamed the other surgeons into stepping up; I'm sure he will do the same with the surgical oversight committee. I'm hopeful they will agree to the surgery if for no other reason than to get him off their backs...I don't care about the "why's", I only care that they agree.

Much of my frustration comes from the different mindset of most of the medical practitioners where we now live. A much smaller city, much more conservative, and VERY timid about dipping their toes into uncharted waters. I've quickly had to become my own, very vocal patient advocate out of self preservation. It's not a position that I'm not capable of fulfilling...I spent a very long time in my working life, bullying, cajoling and sometimes shaming others to get things done too. I simply would rather not have to do that, simply because I believe fundamentally that first and foremost a physician should have their patients interests in the forefront, not as an element to be considered after many other economic issues are looked at first.

That's a whole other, much more polarizing topic, and not worthy of a lot of additional ranting on my part. I'd just like to feel better, and find out what causing me to "feel lousy". Hopefully, I'll have a better handle on that by next week, and a much improved outlook. I really am a pretty up-beat guy...at least I think that some of the other "old-timers" here on OCF would tell you that.

I'll update this post as things change. Again, a long delayed "Welcome!"


SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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Hi Wayne! Glad you are posting again, but not glad to hear about your problems. I saw your photos and you look to be very uncomfortable. I cant imagine the frustration you have just trying to find doctors who will agree to treat you. It sounds like your former doctor and his team will be a good choice.

Hope you get some pain relief and are able to get everything fixed. I wish you all the best with everything you are going thru.


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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Posts: 2,671
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I sure do hope some good things happen for you, Wayne! Sounds like your "old" surgeon is a really good one to have around and has what it takes to get others moving in the right direction. Keep up the fight. You certainly deserve to have things go right for you. Looking forward to some good updates!


Anne-Marie
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.)



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"OCF Canuck"
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Yikes!!! All of it sucks! So glad you beat it but the side effects sound brutal! Keeping fingers crossed and saying a prayer that you get what you want in terms of surgery - your surgeon sounds great! And of course the best place to be is a teaching hospital for the kind of surgery you need. You sound very much like you have a wicked infection going on. (frankly hospitals are the worst place for a sick person to be!!! smile ) hopefully they find something to treat it. Hugs - hope you feel better soon and get some answers - maybe it would help if you go and lay in the hospital's foyer - telling them to hurry up you can't take much more. It kills me when they worry about their arses more than the patient. take care!


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
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Wow, you really have been going through a lot. RT � the gift that keeps on giving! Like you, many of us have won the first battle and then have to deal with the aftereffects. It seems you have really gotten hit extremely hard with the aftereffects. I�m glad that your old surgeon is taking up your fight once again. I wish you the best and please keep us posted.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Oct 2011
Posts: 32
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Blessings and hugs to you! and to your surgeon willing to battle for you too! Although I know my husband can anticipate another three weeks of hell, well, it seems so managable now after reading about what you have been forced to face.

Please take good care and keep us posted. Prayers and positive energy coming your way!


Gayle, CG to incredible husband, age 53 yrs
DX 10/26/11, never smoked, casual drinker
Stage 4, T2 N3 SCC, right tonsil, node cluster in r. neck
Tx 2-3 cycles induction chemo followed by chemo-radiation 33 treatments w/concurrent cisplatin for six weeks of 7 week treatment
PEG in 02.03.12
Joined: Jun 2007
Posts: 5,260
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I can feel your nmisery for sure this time. I have a large hole in my left eardrum from one of my Magical ENT'S. If he wasn't such a nice guy, I would have him in court. I sure as heck hope they can fix you up so you can keep posting to the family. Got ya in my prayers and hopes for the next few years and longer... Jim


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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