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Fibula Flap Jaw Reconstruction, after RADs #199353
10-30-2019 09:48 AM
10-30-2019 09:48 AM
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Tee Tee Emm Offline OP
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Tee Tee Emm  Offline OP
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Hello all ! Brand new here , looking for some insight . My husband had floor of mouth cancer removed June of '18. Removed lymph nodes and a portion of jaw on the same side . The jaw was replaced with a titanium chain and his tongue is sewn over to that same side . (Surgery in Knoxville TN , about 4 hours away , but followup care done locally. Long story .) He went through 30 low dose rads after surgery, no chemo . His surgeon wants to do a fibula flap jaw reconstruction next spring . The local drs think this is an awful idea , mostly due to potential complications from dealing with radiated skin and bone in the area . Also , there is uncertainty as to what the ultimate long term benefits will be . I am looking for any info from those who have had this same procedure , ideally those who had it after radiation . Overall , he has been the model patient . Does 30+ sets of throat and swallow exercises daily and walks 5 to 6 miles daily . Eats well , for the most part , and supplements with Boost VHC . All drs near and far are beyond pleased with his current condition. All scans have been clear .His main issue is with the lack of movement of his tongue, due to the configuration the surgeon chose . This upcoming surgery was sort of sprung on us at the end of our last visit to the surgeon, so right now we have more questions than answers . Apparently , this was always his plan, assuming my husband recovered well and did all the recommended rehab stuff . We have an appt with the surgeon on Dec 2 to discuss further , at my insistence , and the consult with the surgeon and plastic surgeon is scheduled for late January .

Sorry my first post is a novelette, but I know the more info I give , the more helpful it is . Thanks !!

Re: Fibula Flap Jaw Reconstruction, after RADs [Re: Tee Tee Emm] #199355
10-30-2019 07:49 PM
10-30-2019 07:49 PM
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Maine
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Vicky1 Offline
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My dad had a second mandiblectomy after rads, but his was due to a recurrence, not for any improvement cosmetically or functionally. I don't think my dad would have considered another surgery if the cancer hadn't returned. They monitored him very closely after the surgery and I noticed they did a lot of pricking the skin to check for blood flow, and a lot more frequent Doppler checks on the flap. He had a fibular reconstruction with his first surgery and a scapular reconstruction with his second. They had to get a blood vessel from the opposite side of his neck as the vessels where he was radiated were no good. They also took skin from his back and replaced some skin on his face, where the radiation had compromised it. My dad's surgeon said they can do the reconstruction without taking bone from elsewhere on your body, but that it was sort of a last resort because of the complications. I only have my dad's experience to go by, but I am surprised your surgeon didn't do bone initially. Was there a reason why they opted to go with metal rather than bone? They told my dad if they could clear him of the cancer, he could consider doing HBO treatments should he want or need to have his remaining teeth removed. HBO lessens the odds of osteoradionecrosis, which is apparently a fairly common complication after having dental work or surgery done after rads. Until he has no cancer though, its a no go as the HBO proliferates the cancer as well as it heals wounds.


My father's information:
65 years old
Diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
Re: Fibula Flap Jaw Reconstruction, after RADs [Re: Vicky1] #199356
10-31-2019 04:30 AM
10-31-2019 04:30 AM
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Tee Tee Emm Offline OP
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Tee Tee Emm  Offline OP
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Thanks Vicky ! The worst issue with having surgery out of town and after care locally has been drastic variations in the methods of treatment between the two medical teams . His surgeon is very highly lauded in this field and prefers to do the jawbone replacement about a year after the first surgery and a round of rads. I am not sure of the reasoning , which is one of many questions we'll be asking in December (not that it really matters now). May I ask how long the hospital stay was , and how long it was difficult to walk after the fibular procedure ? HBO has never been mentioned by either team of drs . Thanks for your input !! I really appreciate it .

Re: Fibula Flap Jaw Reconstruction, after RADs [Re: Tee Tee Emm] #199357
10-31-2019 05:18 AM
10-31-2019 05:18 AM
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ChristineB Offline
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Welcome to OCF! Im so glad you have found our site to help you and your husband with info and support. We've been thru many of the same things your husband has and can help guide you with our view from the patients or caregivers perspective. One important thing to always remember... OCFs members do not have medical degrees or years of medical education, clinical patient experience, your husbands complete medical history (not that it would help us anyway) or the patient in front of us to examine or to ask clarifying questions. We arent qualified to second guess a doctor or know what they were thinking when drawing up a patients treatment plan. They should be going by guidelines every facility in the US abides by which is a highly detailed flow chart for all kinds of different scenarios.

Thanks for giving so many details! You're absolutely correct... the more you pass along to us, the easier it is for us to understand the situation and try to help. Just like any serious health condition, anyone with cancer can and should go for a second opinion before agreeing to a specific treatment plan. If at all possible, the patient should have a consult at a top Comprehensive Cancer Center (CCC). I know for many it seems like an impossible task to travel far to be examined/treated, but theres places to go for assistance with transportation. From free to ridiculously low airfares to patient hospitality houses where patients and their caregivers can stay at very nominal cost ($5, $10, $20 a night) or free when they live a great distance from the CCC. I'll give you the link to the financial page if thats something you would like to look into. The link to the financial help section is at the end of this reply...

Even though Im not a medical professional, I am curious what led up to the second part of the treatment plan where another major surgery is necessary??? If this was the plan from the beginning, WHY??? Especially since the outcome for the original surgery isnt anything anyone can predict, not even the most experienced doctors! I cant imagine the initial diagnosis and/or treatment plan would knowingly put the patient thru another mandibulectomy, especially after rads. Plus, that you and your husband were unaware of it and surprised to hear theres a need for another mandibulectomy The only explanation I can imagine is the surgery is more for cosmetic reasons and/or reconstruction. Basically your husband would first go thru the mandibulectomy for the goal of eliminating the cancer. Patients going thru a surgery like what your husband did, followed by 30 rads that were probably done to clean up any random straggling cancer cells will have a very long road for a full recovery. Ive been thru this myself, and know many others who have had this done as well, so I completely understand how complex this kind of surgery can be. After a major invasive surgery like the mandibulectomy, swelling can take a long time to go down. Doctors have all told me it takes a year for everything to "take" and after a year its ok to go in and make minor changes. Ive run into many of the top doctors in the US when doing different OCF events and medical conferences. A few have suggested more surgeries to "fix" my appearance from the mandibulectomy complications I went thru 10 years ago. However this is NOT worth risking my life for and it would be much to much for me to get thru so I refuse any other major surgeries. My regular ENT has told me after what Ive already been thru I run a very high risk of having even more complications than with the original surgery. Im assuming the next phase, a second mandibulectomy is to go back in to clean it up, swap out the titanium for bone and make a few changes to rebuild the area while making it look even better and more functional??? I have had a couple surgeries to adjust what the mandibulectomy did, but definitely NOT anything close to what is being suggested to your husband. Plus, this kind of surgery already comes with a high rate of complications where missing a couple teeny tiny blood vessels could mean it fails or if a couple become untied even worse... bleeding! I have not interacted with anyone (out of at least 30+ that I know) who had a mandibulectomy and their treatment plan included a second mandibulectomy a year + later. This does NOT mean, its never been done!!! Its something I have not seen before but I have seen many mandibulectomies have complications (including mine) and require several "tweaks" for cosmetic purposes a year or more after the original surgery... myself included!

I really tried to avoid speculating but hearing the second mandibulectomy was part of the original game plan just doesnt sound like what anyone else Ive ever talked to about a mandibulectomy has been thru or that it was even suggested. m hoping all my speculating isnt making this any harder!!! Its just not possible to determine the whats behind things doctors/specialists do. This is another reason why its so important to seek out a CCC for at the very least a second opinion. The CCCs use a team based approach so all the specialists are working together with everyone on the same page. They meet and discuss each individual case at whats called their tumor board meeting which patients and caregivers are able to attend and participate in the meeting. Its the perfect time to ask any and all questions so you both fully understand everything. You can still get your husband seen at a CCC, some of them will even do a consult without the patient traveling. Before any other surgeries are done, get all your husbands medical records together and get a second and 3rd opinion. If this was part of the original treatment plan it should be written down somewhere in your husbands records.

Im sorry Im not more helpful. Wishing you and your husband all the very best with the difficult decisions you are facing. Since cancer isnt part of this equation, to me I feel you are being very smart proceeding with caution and talking to other professionals before doing anything. As I always say... surgeons cut, thats their job so they always advise patients to have surgery but that may not always be what works best for every patient. Especially when its so complex like a mandibulectomy.

Bets wishes!!!

PS... Vicky mentioned the HBO which in this situation would be something necessary doing 20 before and 10 more immediately after the surgery. This would help with healing as well as post radiated areas do NOT do very well with healing!!!


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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
Re: Fibula Flap Jaw Reconstruction, after RADs [Re: ChristineB] #199358
10-31-2019 06:30 AM
10-31-2019 06:30 AM
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Posts: 4
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Tee Tee Emm Offline OP
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Tee Tee Emm  Offline OP
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Joined: Oct 2019
Posts: 4
Very very helpful and very appreciated ! Re-reading again and will share with the hubs tonight . Thank you !!!

Re: Fibula Flap Jaw Reconstruction, after RADs [Re: Tee Tee Emm] #199359
10-31-2019 02:19 PM
10-31-2019 02:19 PM
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Posts: 3,262
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
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Tee Tee Emm,

I had a mandiblectpmu with a fibula free flap reconstruction about three years ago during one surgery, which took about 8 hours.

I was in the “step down” unit for 6 days before I transferred to a long term nursing care facility. Most patients are up and walking by then, and go home, but with my back ground I needed extra care for several months. One was that my carotid artery and vein from my chest were used to supply my jaw as prior surgeries had me vein depleted including the carotid artery. I had a trache stoma longer, about a month, due to delayed healing from radiation 5 different times equalling more than 200gy! The trache was replaced with one I could speak with about 3 days after my surgery. I did not get out of bed to walk as most did with this surgery. I went to rehab after 6 days. The stoma from the trache removal took about a month to fully close, which I otherwise had to close the stoma with gauze to speak. My fibula did not fully heal even upon my discharge and walking even after 6 months, so I had another surgery to close the fibula with a graft from the groin, and that finally worked.

I go to a ccc in Manhattan, and my surgeons (ENT & Plastic Surgeon) did my surgeries, and both have extensive experience in this surgery and the reconstruction from the chest and other areas.

I hope this helps


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Re: Fibula Flap Jaw Reconstruction, after RADs [Re: Tee Tee Emm] #199363
11-01-2019 05:47 PM
11-01-2019 05:47 PM
Joined: Mar 2018
Posts: 70
Maine
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Vicky1 Offline
Supporting Member (50+ posts)
Vicky1  Offline
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Joined: Mar 2018
Posts: 70
Maine
Of course! Dad's stay in the hospital for the first surgery (the fibular reconstruction) was 7 days. I think it was 9 days the second time (scapular reconstruction), after rads. They told us to plan for a 7-10 day stay each time. Dad was actually sitting in a chair and having tube-fed meals two days after surgery with his fibular reconstruction. He was walking to the bathroom with assistance and a walker four days out? And he was making laps around the hospital before we went home. We came home with just a cane. He had a visiting home nurse come check his wounds and do strengthening exercises with him for about a month. He used the cane for several months if we had to go shopping, or back to Boston for follow up, or any place that required more than a few minutes of continuous walking. Now he doesn't use a cane. I think his ability to press his foot down isn't quite as strong as it was before as he's only occasionally driven his beloved standard-shift street rod since. He gets around really well these days, though. Likes to tinker on his cars and walk down behind our house to where the parts cars are a few times a day.

They told my dad before his second procedure that the fibula is the most painful of the places to take the tissues for reconstruction, but Dad said he wasn't really in pain after the first surgery, and having an injured arm was more difficult, painful and inconvenient.


My father's information:
65 years old
Diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
Re: Fibula Flap Jaw Reconstruction, after RADs [Re: Tee Tee Emm] #199578
12-06-2019 10:40 AM
12-06-2019 10:40 AM
Joined: Oct 2019
Posts: 4
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Tee Tee Emm Offline OP
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Tee Tee Emm  Offline OP
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Joined: Oct 2019
Posts: 4
So here's an update...we saw his oral surgeon yesterday .The fibula flap wasn't done initially because the cancer needed to come out immediately and the plastic surgeon for the flap procedure was not available . We will see both surgeons in January and the flap procedure will be done as soon after that as the plastic surgeon can schedule it . He will do 20 HBO treatments before surgery and 10 after . The reasoning for doing it , is that the titanium will eventually fail and surgery is much more successful when the existing bone is not compromised by a screw coming loose or some other malfunction . Also, radiation "damage" or whatever it is called increases over time , so sooner is better than later . We both feel a lot better now that most of our questions have been answered . Thank you all for your valuable input ; I used a lot of your experiences to develop my lengthy list of questions for the surgeon.


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