I'm new to this. I am my husband's caregiver. November 2007, my husband had surgery for SCC, right mandibular retromolar trigone resection with free flap reconstruction. He is diabetic with excellent control of glucose (A1C 6). One week later, free flap became necrotic and had to be redone. PEG tube Jan 08 then six weeks radiation ending in March.

Post radiation infection with surgery to open and drain. Then HBOT (40 dives). PET--July, Oct., Dec. 08, and July 09 clear.

The first PET showed a loose screw in the center of the plate on his jaw and was removed in the surgeon's office. That hole never healed over and oozed junk for months.

Last April, the lower front edge of the plate broke through his skin near his chin and another screw came out. Since then, the skin has receded and one third of the plate is exposed. We found out today that he had fractured his jaw right where the first screw was!

He will be having jaw reconstruction in November using his fibula and skin graft from (R)leg. We are hopeful that this will correct a number of issues. ie jaw alignment, bite, mobility, vascularity and of course appearance.

So, has anyone out there been through this? The PS estimates 6 to 10 hours for the procedure and 6 days in hospital.

Anita

Hi Anita and welcome to our family,

the procedures your husband has had are fairly common place now i am sorry to say,and a lot of our members have had them done .Unfortunately a few have had similar complications,but of course with diabetes present the chances of this happening are a lot higher.Lets hope this second go round will be more successful.I am sure you will gets lots of feedback from the guys here and keep us updated on his progress.

Anita I have no answers as Bobs surgery for the flap etc was down graded during procedure BUT there will be answers here. If they are not forthcoming search the site and find them. Sending wishes for a good outcome

Reading what Bob has been through makes me feel like a complete chicken!! Wow - he really has been through the ringer. I don't have any answers regarding his former or proposed surgeries but wanted to welcome you to the board anyway. I know there are some here who have had similar surgeries and will respond.

Hope all goes well in this next surgery.

Donna

Anita, your Bob has been thru quite the war with this OC and it;s good he has you by his side. There is nothing I can add to the words of wisdom by the posters above this. They are knowledgeable people. You and Bob have all of my best for whatever that is worth. jim

Thank you all for your thoughts. My husband's name is Clark. He has a positive attitude and is ready to get moving on this. I will let you know how thing progress. Thanks again for your support!

Anita

Anita,

Sorry to hear that your husband is having to deal with this. Just when you think that you can get on the road to recovery BAM something like that happens and you have to deal with something so major all over again.

I have had nearly all of my mandible replaced & reconstructed with bone from my hip. They also had to do a tongue flap reconstruction because of the necrosis damage. Besides the bone they also used the skin/tissue from my hip area to reconstruct the tongue flap. They could have used my fibula for the mandible but then they would have had to of taken skin for the tongue flap from else where anyway, due to the hair follicles on the leg area.

I had a screw become exposed last year under my chin, thankfully that was removed without any major dramas in day surgery before any infections could occur.

The surgery for my mandible took about 14 hours, but that also included the tongue flap reconstruction. I was in hospital for about 4 weeks. I had a trache for the first 12 days due to the swelling, which I was advised of before the surgery. I have 7 or 8 plates around my reconstructed jaw bone with at least 18 screws (what I can see on the OPG xray)

As there was about 5 cm of my jaw reconstructed - my jaw/chin is not the same shape that it used to be and I will need to have further surgery to improve that.

In my situation there was also the possibility, due to surgery, of some nerve damage at one side of my mouth, so that is something that you definitely should ask the surgeon about.

Please send me PM if you have any questions that you think I might be able to help with.

Karen

Hi Cookey,

Thanks for responding to my post. You are so right about diabetes being a complicating factor. That's exactly what Clark's doctors say, even though he has tight control.

I'll let you know how thing go with his surgery.

Anita

Hi Deni,

Thank you for your well wishes. It's very comforting to be among others who really know what this journey is like. All the best to you and your husband.

Anita

Hi Donna,

Thank you for taking the time to welcome me here. I am so glad I found this site! And it is encouraging to be among so many who share their unique and similiar battles with oral cancer. You are not a chicken, I see you more as a beautiful swan.

Anita

HI Jim,

Thank you for your kind response. Looks like you've been posting for a long time. What a gift this is! I feel so encouraged by everyone and comforted, too. Your good wishes are very much appreciated.

Anita

Hi Karen,

Thank you for sharing your story with me. Wow, you've been through a lot! I am going to send you a PM as I do have some questions. I just wanted to let you know how much I appreciate the time you spent responding to me.

Anita

Hi Anita,

Where is Clark being treated? As you can see I live in Yardley, PA and was treated at Fox Chase in Phila..

I thought I would mention that you might find it easier to respond to posters all in the same post.

Jerry

Hi, Jerry,

Thanks for the tip.

Clark is being treated at Abramson CC at HUP.

Anita

Hi Anita,

Welcome to the board. I live in Trenton and was treated at HUP and am very happy. Who is his doctor?

Take care,
Eileen

Anita,
I had the fibula reconstruction of the mandible in January and am very pleased with the results. It is a very complicated but "elegant" surgery. I am amazed with the whole procedure. It is hard on everyone - the surgeons put in such long hours of complicated work, the family waits forever and then the patient is in the ICU for days and then in the hospital for a while and there is the long recuperation at home and afterward. It seemed much longer and more involved than the original surgery.

HOWEVER - the fears and unknown factors of cancer aren't there. I feel that the surgery was very much worth having and am glad that I did it. I found that my speech and swallowing improved and am pleased that the center of my chin is almost perfectly lined up under the centerline down from my nose. I am disappointed that I am not a candidate for furter prothodontal dental work to give me more teeth but am reasured by the fact although it did cost a lot for dental apraisals and I mayy have be able to recover some of the $$ I had the the best possible advice in that area.

If you would like to talk, pleas PM me.
Malka

I'm glad you posted Malka. I wondered how things turned out for you. Congrats there lady.

Eileen,

Head and Neck --Weinstein
Rad Oncologist -- Quon
Plastic -- Low
Prosthodontic -- Schaffer
Oral Surgeon -- Carrasco

We actually haven't met with Carrasco yet. Appt this Thursday. We are very happy with the people at HUP. Clark's team has been wonderful.

Malka,

It's so good to hear that you are happy with the results of your recon. Did you have a trach for this procedure? And how much swelling did you have? We are both feeling really positive about all this. Just want get as much info as we can about what to expect.

Anita

Anita,
Yes,I had trach with both the original surgery and the reconstruction. I would ask your doctors exactly what to expect as we all heal differently. I happened to have done very well with the trach and healed quickly. The one part that I did not like was the surgical boot. I was very uncomfortable with it and my back hurt when I used the walker until the physical therapist who came to the house ordered a juvenile walker because I am 5' tall and the regular one was too high. Once the dr. told me that I didn't need the boot 24/7 I began using a plastic ankle brace and crocs with thick socks. After my first followup visit the dr agreed that was OK for me.

The swelling in my foot lasted for many months. It has finally gone down. I had the surgery in January and in May I bought a pair of good pumps for dress and they seemed Ok in the store. When I tried to wear them, I could not get through dinner. THat same week I briefly wore loafer type shoes for a few hours a couple of times but found the crocs and thick socks I have been wearing for the past few years did better (lace-ups probably would have worked as well). I did not have the possible nerve damage which causes the big toe to droop.

Malka,

You have given us a lot to think about and I need a few days to respond. Please know that I just need time to gather my thoughts. This is so big!

Why did you have the surgical boot? I thought that they use the fibula for grafts because it is a non weight bearing bone that we don't really need. I guess I expected that Clark would be able to walk unassisted right after surgery. Boy, I must sound like such a greenhorn! Hah!

We have an appointment tomorrow with the oral surgeon. We will ask about the trach. Clark's procedure is on the 16th of November. In addition to the fibula graft that the plastic is doing, the oral is removing 2 molars and may be doing a "release" which sounds like it may help loosen up Clark's jaw.

I'll let you know what we learn tomorrow.

Anita,
Welcome to the merry-go-round. There are always questions. By coming here you will find many answers as well as more questions. If you took a poll no one here received all the information upfront as each incident is different. The best any of us can do is to just keep putting one foot in front of the other and try to go forward as we spin in circles.

Clark will not be dancing for a while. A titanium bar is used to replace the removed portion of the fibula. The boot is the type used for a broken leg. The ankle has to be kept stabile and the leg can not support the full body weight for a few weeks as the site heals. During that time a walker is used and the patient gets physical therapy to strengthen the muscles.