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#148863 - 04/29/12 11:16 PM First time post....Need help for dad!  
Joined: May 2011
Posts: 2
syd Offline
syd  Offline

Joined: May 2011
Posts: 2
chicago, il
Hello family,

My father has been battling this terrible disease for four years now. AFter his mandibulecotmy with a fibula free flap he has experienced hell. The surgery never healed right and about a year now from surgery his titanium plate is showing through his skin. The surgeon my dad used was a hot shot in the Midwest area and we heard a lot of good things about him but follow up has been terrible. His attitude and willingness to explain is terrible. Now he has told us he is at the end of the rope with my dad seems he is just too busy.

Ohh well kind of expected it knew health care is a big business now. But either way has anyone had similar experience with their plate being exposed. I have no idea what to do for my father now as I feel helpless. The surgeon has really put us in a tough spot.

CG for Dad
11/8 SCCHN uk prim
2/9 Cisplatin and 36 rad
11/10 recurrence in lower left jaw and mandible
5/11 manib fib free flap
4/12 non healing fistulas and plate exposed through cheek skin!
#148867 - 04/30/12 02:16 AM Re: First time post....Need help for dad! [Re: syd]  
Joined: Jun 2007
Posts: 10,018
ChristineB Online content
Administrator, Director of Patient Support Services
ChristineB  Online Content
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,018
Welcome to OCF! I have seen different patients come thru here who have had problems with the titanium plate or screws coming thru their skin. Im sure it must be very painful! I have had a mandibulectomy myself but my body rejected the titanium immediately and it was removed.

A mandibulectomy is such an invasive operation that recovery can take a very long time. It took me a year to recover. I ended up with complications and did 8 months of IV antibiotics thru a picc line and many hyperbaric oxygen treatments. Eventually I healed and recovered.

The doctor who isnt helping your father after it was his surgery is a very poor excuse for a physician! I would take him to a large cancer center where they are familiar with mandibulectomies. That type of surgery can be preformed by an oral surgeon, ENT, or even a plastic surgeon. Mine was done with an ENT and plastic surgeon working in teams. For all of my reconstructive surgeries afterwards, my plastic surgeon took care of those. You sure are correct with being in a tight spot. Surgeons hate to fix anyone elses work, especially in the same area. You may end up traveling a distance to find someone who will touch your father.

Best wishes!!!!!

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
#148869 - 04/30/12 03:18 AM Re: First time post....Need help for dad! [Re: ChristineB]  
Joined: Feb 2011
Posts: 117
Ingrid K Offline
Senior Member (100+ posts)
Ingrid K  Offline
Senior Member (100+ posts)

Joined: Feb 2011
Posts: 117
Huntley, IL
Syd, where was your dad treated ? I was treated at Loyola at the Cardinal Bernadine cancer center ? I can give you my surgeon's info if you send me a private message.

DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
#148871 - 04/30/12 05:29 AM Re: First time post....Need help for dad! [Re: Ingrid K]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
The advice here is good (hi and welcome btw)see a different surgeon preferably one at a ccc. Hugs!

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
#148887 - 04/30/12 03:05 PM Re: First time post....Need help for dad! [Re: Cheryld]  
Joined: Jun 2007
Posts: 5,260
EzJim Offline
Patient Advocate (old timer, 2000 posts)
EzJim  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
Mingo Jct., Ohio
Have you given your That Dr your thoughts about his mouth and behavior? If not, go for it with both barrels. Mine have been mostly good except for one tha put a hole thru my left eardrum. Him I keep thinking should put me on his payroll via way of a lawsuit. Get your dad to a CCC and let them check =him out and as for the bad Dr, complain to the Hospital and licensing board of your state. I have been lucky like a lot on here. My Drs have been friendly and will explain anything you ask.

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
#148892 - 04/30/12 03:50 PM Re: First time post....Need help for dad! [Re: syd]  
Joined: Sep 2009
Posts: 697
AnitaFrances Offline
"Above & Beyond" Member (500+ posts)
AnitaFrances  Offline
"Above & Beyond" Member (500+ posts)

Joined: Sep 2009
Posts: 697
Media, PA
Hi, Syd,

My husband had/has similar issues. He also had the plate break through the skin 2 years ago with recurrent infection in the same spot. His plate was eventually removed as he did not really need it anymore and his body was rejecting it. The surgeon used a flap from his back to cover the defect. The new flap was quite large and since then he has had 2 more surgeries to debulk it. But the infection was persistent. Last Monday, he had what we thought would be his last procedure to finally get rid of the infection. Well, it turns out he has a fistula. The PS reamed out the fistula to encourage it to close. What we realize is the fistulas are difficult to control and manage. We are hoping this will resolve, but until it does, it is maddening for my husband. Like your Dad, he is frustrated and tired of dealing with a weeping hole in his face.

It is important to have a surgeon who is willing to talk with you and your Dad and address your Dad's fears and concerns. I would find someone else if he continues to blow you off. We have been very happy with the PS we have and the relationship is open and honest. We feel very comfortable expressing our fears and worries to him. A good surgeon will never get defensive and will take the time needed to explain everything. He even gave us his email address and his cell phone number. That says a lot about his commitment to my husband's care and his willingness to be available. And we do not abuse this by contacting him off hours for things that can wait. But just this past Saturday night we had an emergency and I was in contact with him during the event. It was reassuring to both of us to be able to get him on the phone.

He told us that the exposure of the plate was not uncommon in radiated patients. And that the body can eventually treat the plate as a foreign body and try to reject it, ie the presence of infection. Your Dad's surgeon may not be equipped to handle his case any longer and instead of admitting that, he blows you off. FIND ANOTHER SURGEON FAST!

This is fixable. And your Dad needs someone who is competent, confident, and experienced. Most of the cutting edge treatments are at the large CCCs in research based settings. Don't give up. There is always hope.

My best to you and your Dad--

Last edited by AnitaFrances; 04/30/12 03:59 PM.

Anita (63)
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

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