Dear All,

I am such a lucky girl to have been declared to be cancer-free at two years. This site has been a God-send for the support and information it has provided.

I need some more information and advice, please. My surgeon suggests that I have reconstruction of my upper maxilla. (I lost 5 teeth and the bone that held them, (so that is about 2/3 of one side of the upper jaw that is gone,) in addition to part of the hard palate.) There is a permanent opening in the roof of my mouth about the size of a half dollar. I have to wear an obturator appliance to speak and eat. I am doing remarkably well, and I am thankful for the appliance, but the idea of being "fixed" is very, very tempting.

I need to hear from those of you who have had either upper or lower jaw reconstruction using the fibula from the lower leg. Did you have problems with the graft taking, or did you have a failure? Did you have problems with your leg after harvest of the bone? Did it heal properly? Did you have difficulty walking? Do you still have problems such as a limp or weakness or numbness. Do you have problems with your ear?

I very much want to do this surgery, but at the same time, I could live out my life with this appliance. I am 64 1/2 and intend to be around for a long time. However, if I were younger, this would be an easy decision, and if I were much older, there might be no decision, so I am on the fence.

HELP! I need to know all you can tell me about it. Feel free to answer here, or to PM me or email me. I want to know the good and the bad. Thanks! This is a big surgery, and it is a big decision, and I need your help to make it.

XO--Colleen

Colleen,

I could have written that post with just a few changes. My story is almost identical to your's except I had a ND and lost the left mandible. I am the same age and had my surgery July 05. I also have the same concerns and questions about reconstruction and the fibular flap. That is what brought me here.

I live in NO, where are you? If we both decide to go ahead with this perhaps we could do it as buddies at the same time. Do you think we could get a 2for1 rate??


Malka

Use your senior discount LOL I will be watching for answers to your questions and I admire you for wanting to get it fixed if it's not too bad of a struggle. I was told wt the 1st cancer center I went to that I would need to have that done too. Glad I got a second opinion but not glad I didn't get radiation. Now I have it on both sides of my tongue. But I shall whip it. Have a great day you 2.

Thanks, Malka and Jim....

Senior discount...Jim, I oughta give you a punch! (but you're right....I did tell you my age, so what can I expect??)

Malka, I am in Alexandria, in the center of the state. I understand that much of the LSU head and neck program has moved to Baton Rouge since Katrina. I have met another person with a similar surgery to mine....called Splenda on this site, and lives in Madisonville, on the Northshore by Mandeville. She had her surg. right before Katrina and lost track of her doctors for a while. Eek!

Where was your surgery done? With whom have you spoken concerning reconstruction? My surg. was done at LSU in Shreveport, and my surgery is excellent. (I also had a ND.) My surgeon has done only 4-5 of these reconstructions, though he has done many other types of extensive reconstructions. He lectures all over the world, so I will probably let him do it, though I plan to get a second opinion at M.D.Anderson first.

Feel free to email me. Let me know what you are thinking.

How are you getting along with the loss of your mandible?? I thought that they usually did that repair at the time of the first surgery.

My internet research indicates that the fibula is harvested as a graft for many other applications other than just oral surgery,and that it is fairly common to take that bone. My orthopaedist says that from his point of view, it is not a bad thing to do....that the fibula has little function. (What they don't say is, "......at your age......") I am not elderly by any means, but probably my tennis and snow-skiing days are over anyway.

Write again! and we can sign up for a double room. And you guys who have already had this surgery, please weigh in. I need help with this decision! Thanks.

Jim - I always thought that a person was a certain age just because that was the time between being born and that specific day. However I have never looked forward to a birthday like the next one. I am so jealous of my husband everytime he goes to the Dr. or gets a test and pays nothing or $5 just because he has passed the magic 65 and it doesn't cost him the hundreds of $$ I pay for ins and has no deductable to meet.

I had surgery in New Orleans at Baptist Memorial Hospital just before Katrina. In fact, Splenda had her surgey there the day I went home. Mine was done by the head of the LSU Head and Neck Oncology unit. I was fortunate to find excellent care in Houston and eventually went to my surgeon who was temporarily in Lafayette. (For those of you who don't know this is 4 hours from Houston and 2 from New Orleans.)
I am so thankful that I decided not to have reconstruction at the same time as the initial surgery. Evacuation was hard enough as it was so close to post surgery. We consulted with the plastic surgeon who would have done it and decided that the extra hours of surgery and weeks of recovery and physical therapy were too much. I was concerned from a functional and not from a cosmetic point. My doctor felt that I would possibly need speech and/or swallowing therapy post surgery but that I could wait to see if I wanted or needed reconstruction.
My doctor is now the chair of the ENT departmen at Tulane so that is where I am going. Reconstuction would be done by the plastic surgeon on that team who trained at Sloan-Kettering.

Malka.....what a story! My husband is a Tulane-trained physician, so we have a great deal of respect for Tulane. Who is the ENT chair now? the plastic surgeon?

I have so many questions, and my husband, who is a surgeon himself, is worried about the many things he feels could go wrong with such a big surgery, especially since i am doing well with the obturator. He does, however, realize that he has no idea what it is like to live with the obturator. It isn't just awful, and I do quite well with it, but I don't want to live 20 or more years with it, and I DO intend to live 20 or more years!!

Hey Colleen,
In your shoes I would have the surgery without even thinking about it. I had it done in 2003, bottom jaw, and it's been the easier part of my treatment and caused me the least issues. My jaw looks and works normally and my leg is fine, although I can't run like I used to and have to be careful about coming down on it really hard..........it hurts! But I rarely think about my leg or my jaw. The surgery is very doable.
Take care,
Minnie

Thanks, Minnie,

Is your running problem because it causes pain to come down hard on your leg? or is there some other lack of function? Sadly, I never did run, and whether or not I have the surgery, I have other leg and foot issues that keep me from skiing or playing tennis. I AM a little concerned about these other issues, but I don't think that either will interfere with the other, as long as I don't have some sort of nerve damage from the surgery.

I even asked my orthopaedist about how the loss of the fibula would affect an eventual knee replacement if I needed one, and he said that it would not affect it at all.

How is your other leg wound coming along? I know that you were having healing issues from the donor site for your recent tongue surgery. I hope you are over that hump finally!

Colleen,
The Doctor I see, Dr. Paul Friedlander, is presently interim chair of the Depatment of Otolaryngology Head and Neck Surgery at TU. The plastic surgeon is Dr. Eddie Chui.

Please forgive me as I hijack this thread to describe the medical situation here. Even if someone has followed all the news from this area it is impossible to understand what Katrina did to our medical care. We thought that evacuation would only be for a day or so, not weeks and months. With any storm to our area, even heavy rains, we expect some street flooding and electrical outages. These normally last a few hours and at worst a day or two and there are always areas that have electricity and water when others don't. The major evacuation was Saturday and Sunday so most people expected to contact doctors on Monday or later in the week to reschedule appointments, etc. For those who were under critical care such as chemo there was the need to establish contact with a medical facility. Cell phones did not work and the immediate concerns of most people were shelter and establishing contact with family and friends. Finding medical care and even refilling prescriptions was a nightmare. Since communications were down even getting bank information was impossible. There was no way to contact insurance providers so most doctors and medical facilities accepted patients and worried about being paid later. Of course OTC meds and supplies, came out of pocket as did food, gas, lodging,clothes, and personal items since we only took enough for a day or so. (Most of us wore old comfortable clothes and left the more presentable and certainly our dress clothes home - more expenses down the line.)

When it became apparent that we weren't going home soon, many decisions had to be made. These were based on factors such as how location of one's home and workplace were affected, school for children, age and health of family members, cost of living, health - physical and mental, and most importantly, financial concerns.
The medical community had a particularly heavy burden. For those who stayed, the physical and emotional toil was unimmaginable. Hospitals were destroyed or rendered unusable for weeks and months putting a strain on those in neighboring communities. The medical teaching and research facilities had to follow evacuation plans that were ment to be temporary, not months long. In the aftermath many changes have been made. There was a cutback in jobs at all levels from office staff to technical specialists to top staff and even some departments were cut out completly. Patient bases and facilities for some areas became nonexistant. Professionals such as nurses could not find work out of town because they had no proof of licence. Just the toil of not being able to work was devistating to all who were used to high pressure and being busy.
Even now, two and a half years later, the medical situation is still unsettled. Many doctors and other professionals retired, relocated to other places or changed local hospital and group practice affiliation. Some who relocated elsewhere come here once or twice a week or month to see their regular patients or are trying to establish a renewed pratice. There are still not enough technical and support staff and the nursing shortage is a major problem.
The toil on patients and families has been in some cases unbearable and tragic. Many had to find new doctors in areas where they had little or no contact or support and relied on chance to find appropriate care. Unless critical, much health care has been ignored or neglected. For those who returned home, even if their homes had little or no damage there was still the difficulties of struggling with a crippled system. For a while even drugstores and groceries were open in limited locations and for short hours. For months it was not uncommon to wait in line for an hour or more to pick up a Rx.
HOWEVER - We are recovering. Any needed medical care can now be found here. Tulane and LSU Medical Schools, LSU Dental School and their and allied health care schools are still first class!

Colleen: If you were my spouse, I'd say "Go for it"...my hubby was 76 y/o when he had removal/replacement following bilateral neck dissection....read forum posts for details...His surgery was July 19, 6 short months ago..followed by radiation & chemo....You're young!

Lois

Hey Colleen,
My leg issues come from the donor leg being slightly weaker than my other leg. Make sense since they have taken some of it's support bone away. I CAN run if I want to, but would rather not as it puts alot of pressure on that leg. I also find that I can't raise it up as high as the "good" leg if I don't concentrate. I have a new dog and put up some gates to keep her confined to the family room until I have her housebroken. The first time I stepped over the gate I took quite a tumble. I led with my good leg and my donor leg didn't raise up high enough to clear the gate........and over I went. Now I lead with my donor leg and dont have any issues.

My donor site on my thigh from my last surgery is about 50% healed. It's been a real pain in the you know what! But, it's not as painful and I have dressings now to wear so I can come and go as I please.
Take care,
Minnie

Minnie, Lois, and anyone else with experience with this surgery,

Like Colleen, I am considering reconstruction with a fibular flap and have a few questions to add.
If this was done at a different time than other treatment or surgery, how long was the hospital stay?
One of my concerns is that I live in a 2 story home. Did you or your patient have any restrictions on going up and down stairs?
Was PT required?
Did you need a walker?
For each of these questions for how long was this an issue?
Have you experienced any problems with standing for a long time?
Was any dental replacement performed such as implants? My dentist has recommended that I have reconstruction because my bite is shifting.

Has any one had negative experiences following this surgery.

Thanks, it is because I am considering this surgery that I came to OCF.
Malka

Malka, my surgeon says that I would be in the hospital about a week. I think that is to be sure that the grafted artery stays open and that the graft isn't lost. EEK!

I, too, want to know about the process itself...how long I will need care of someone else...how long before I can speak normally...what the chances are of permanent leg problems.

I have met two ladies who have had this surgery--for maxillary and palatal loss. One, Gloria, is in Jasper, TX, and the other, Cheryl, is in Shrevcport. Both were very forthcoming. So at least I have a source of information.

I have even looked into Cheryl's mouth, and I have seen her pictures from start to finish.

My prosthodontist has been more informative than my surgeon. He says that some doctors are placing implants into the grafted bone at the time of surgery, he prefers to have about six months of healing time first. Then he places implants, which need about six months to ossify before they can accept any sort of load. In the meantime, there are various cosmetic denture devices that can be used for cosmetic purposes. The implants are not dental implants. They are implants to hold a removeable bridge.

I plan to call her soon with my list of questions. One difference in her tumor, while more extensive than mine, was not malignant. She did have a larger "defect" and couldn't get satisfaction with the obturator. That is not an issue for you, Malka, but you have other reasons to want this surgery.

Our surgeries would be different, but the issues with the harvest of the fibula would be the same.

I'll make contact with her soon, and I'll ask questions for both of us. She is doing great, evidently.

Malka...and others...I have learned that the first step in the process is to have an arteriogram to be certain that the artery is suitable for transfer, and that the circulation of the leg will be able to handle the artery's loss. Arteriograms are done in day-surgery, I think, since they involve inserting a catheter into the artery in the groin, and there is a danger of bleeding. I don't think that it matters which leg they take the bone from.

The surgery involves a long incision on the side of the calf, and the removal of the middle portion of the fibula, --not the entire length, and not the ends--along with tissue, skin, and the artery, all in a package. I don't know how the leg wound is closed.....whether it requires a graft from somewhere else, or whether it can be closed with something artificial or by granulation. It leaves a significant oval paddle-shaped scar, in addition to the long incision.

This "package" is installed into the mouth (your surgery will be different from mine) The bone is buttressed to the adjacent bone, in front and in the rear, and secured with wires and small plates and screws. the skin will cover the bone and any defect in the floor of your mouth, and attatch, I suppose, to ....the cheek. The artery is threaded down into the neck and inserted into an artery there, to provide circulation to the graft. If that artery closes off, the graft will die, and the procedure will be a failure.

They quoted me a 15% failure rate of some portion of the procedure....higher than normal for other surgeries....

My surgeon said I would be in the hospital for about a week. I don't know if there is some chance of breathing problems.....always a chance with serious oral surgery.....and then I'm sure they will want to watch for signs of failure of the graft .....or other problems.

The girl I know...Cheryl....returned to work at about 3 weeks, but she is in PR and she wouldn't return without teeth, and the prosthodontist didn't want to make her any sort of appliance any sooner. Her defect extended from the jaw around the front of her mouth, and included much of her palate. Mine is not that extensive. He said that he could make me something sooner than that. I have all of my own front teeth....the four incisors, and then the rest of them, and the bone, are gone on the right side. I could manage for a couple of weeks to stay close to home and send someone else to the grocery store.

I will ask Cheryl how much help she needed during that time. The leg would be the primary limiting factor during that time.

More later.....--Colleen

Hi Everyone,
When I had my free flap I was in the hospital for 11 days, but I also had a neck dissection at the same time. I had a trach and once the trach was removed (three days I believe it was) I was talking normally, exactly as I did before the surgery. It didn't affect my speech. The incision on my leg was closed with simple staples, no graft needed whatsoever. Unless you look closely, you can barely see the scar on my leg today. I don't have any paddle shaped scar, I don't know where that came from. My chin and underneath of it was quite swollen for approx 5-6 weeks but I had no pain from it. Once the swelling started going down, it went down quickly. My jaw is not proportioned with the rest of my face and people find it hard to believe that half of my jaw was removed.
My leg isn't as strong as my other leg in terms of jumping and running. But in everyday functions, I don't even think about it. I can stand up all day if needed, althogh there will be a slight burning sensation in my donor leg after hours of standing. Please believe me when I tell you that the leg is not an issue to worry on. When I came home, I had a walker but mine was more because they had put the cast on my leg to tight and when it was removed, we discovered a huge decubitus ulcer on my heel and on the top of my foot. That caused me many problems as I couldn't put my heel on the ground to walk. Even with that unusual side effect, I was walking on my own with a walking boot within two weeks, up and down stairs and anywhere else I needed to go.
I was also eating two days after leaving the hospital, eating normally and anything I wanted. mind you this was before I had radiation.

Hope all of this helps. The surgery is worth the advantages you will get from the few weeks of discomfort.

Love,
Minnie

Another question for those who have gone through this,

From what I have learned it seems that the surgical part will be covered but it my understanding that the dental implants are not. Has anyone had any sucess with having at least a portion of the dental paid by either a regular insurance or a Medicare supplemental plan?
I do not want to have the surgery until this summer. By then I will be on a Medicare supplemental plan. I have a son in Iraq who will not be home until some time in April. Also I want to do some very serious spring cleaning into every corner of the house. I normally do this every year before Passover but year before last we were still in the trailer and last year I only did minimal cleaning except in the kitchen. I closed off a bedroom for storage, taped up bathroom cabinets and since many of our books which I would normaly shake out and dust were still in boxes I covered the others in bookcases. Pictures and art work which would have been dusted and the glass cleaned were not yet hung. I even shocked my family by using disposables for part of the Seder meals. This year I want to do an old fashioned ceiling to floor, corner to corner, matress turning, rug beating, dust flying,porch scrubbing type of cleaning. (I realy believe obsessive spring cleaning is a hormonal thing with females, particularly those of us in the South. It's just that since we have become liberated we have surpressed the urge.)

Malka, I can't believe that we are EXACTLY the same age....so I have Medicare questions also. I will ask my friend about insurance coverage, though she is nowhere near Medicare age.

Minnie...the paddle-shaped scar was on my friend who had a case like mine, with a maxillary repair needed, along with a palatal reconstruction. Perhaps there is some difference in the need for skin and tissue in that case.

I don't know how much new tissue is needed for reconstruction of the mandibular defect. Perhaps existing oral tissue is sufficient to cover the implanted bone.

I soso much appreciate everybody's input. I also received a helpful email from "Dragan"...Wayne. His past posts can be accessed through the Search feature here.

So far, nobody here has had a maxillary reconstruction, but still your responses are quite helpful to me, since the process is much the same.

XO

August,
Did you get my PM. I may somehow have sent it to myself.
My reconstruction failed, so you need to hear from me too.
Debbie

Debbie, I sure do need to hear from you, but no, I did not get a PM.....at least not that I know about. I don't navigate the new forum set-up as well as the old format. Thanks for writing. You are welcome to write me at my personal email, listed clearly at my "profile" page, or post here. Thanks.

I have yet to hear of anyone being successful at getting their insurance to pay for implants. I had to pay for mine out of pocket. Good luck with that one!

Well, I will post it here because I did something wrong on the post. I had surgery last Feb to remove part of my jaw and replace it with my shoulder bone, which is kind of a new thing. I had excellent doctors, plastic surgeon had done this many, many, times and had never had a failure. Then came me. I had a 15 1/2 hour surgery. It took me 3 days to come out from the anesthesia. I was in intensive care for 14 days because they wanted a nurse to look in my mouth every hour to check for failure. I was not allowed to eat or even swallow water the entire time of 19 days in hospital. After coming home on the 22 day, I had a blood vessel burst and had to be rushed to the ER where they had to go back and remove dead bone and such and leave it as was. That was a 5 hour surgery. I was on narcotics and in bed so long, it took me forever to recover. I cannot chew on that side and my mouth caves in a little, but I would never go through that again unless my cancer returned. I am leaving well enough alone. It is different for everybody. Don't let someone elses easy time fool you or my hard time. I think it is just luck and how your blood vessels lock up to a new jawbone.
I now have bone loss happening because of the holes they drilled in my bone to put the new bone in. I go back in March now for a panorex to see if it is continuing. I just thank my lucky stars I am cancer free today and think how it would be if I had to worry about that too. I feel blessed to be able to live, even if I have a crooked smile.
Debbie

WOW! Debbie, what an ordeal! Thank you so much for sharing it. EEK! I am so sorry that YOU had to be the one with the failed surgery.

Did you have to have radiation at any point in your treatment?

Was the vessel that burst the one that was harvested from your back and inserted into your neck?

This is a scary story, for sure.

I wonder if there is something that they can use to stimulate bone growth. I know that there are products in use now that involve ground bone, and bone marrow, mixed with artificial elements, and, when used in certain applications, can stimulte bone growth. I'm sure your doctors know better than I do what is possible. I am a great one for wondering "if" and "why not."

Thank goodness you are cancer-free. I read some of your other posts, and it seems that you lost two teeth and the bone that went with them. Is that right? Is it your wisdom tooth that now is trying to come out? That's too bad, since that would be the anchor tooth for any appliance or bridge. Is there no type of filler that could stimulate re-ossification of that socket, so that you could, down the line, have an implant installed?

Mike and Jerry.....Am I making things up here?? probably.....

I have lost five teeth and the bone that went with them....would have been six, except that I had already lost the wisdom tooth. I think that the upper jaw....the maxilla...is easier to work with since it does not move and has all of the facial bones to work with in reconstruction.

That's my story and I am sticking to it! I want to believe that, so I will!! I hope it's true.

Nobody has responded who has had maxillary reconstruction. The leg issues would be the same, but the oral part of the surgery would be different in many ways. I guess you are still installing bone and tissue, and connecting an artery in your neck to keep the graft alive. All of that is the same.

Malka...you mentioned the desire to have dental implants....My prosthodontist has said that I cannot have actual dental implants..but that the implants that he will install are for to secure a dental appliance....like a bridge, exc. that there are no teeth to hold a bridge. This way, the appliance does not have to clip onto ANY teeth.

I will continue to listen and gather information. Debbie, thanks for sharing your story. I wish you the best. I hope that you get solutions for your problems.

Hey there,
There is nothing they can do for the bone loss, they think ir will stop, but they cannot be sure. Thus, we wait for more xrays and see. If it does not stop, I am in for a lot of trouble. So much so that I cannot think about it. I just pray it will somehow stop. I take calcim and vit d, but it did not have anything to do with my bones being strong. I have very strong bones. My fingers and toes are crossed. I have not been a bad person so far in this life, so I am wondering why? But I am exercising, walking a lot, taking vitamins and I feel very good.
Just the tooth and pain at night with the cheek. I want to be as strong as I can be.
Please think long and hard. I am a lot younger and still do not want anyone to touch my face again!
Debbie

Debbie,
Hasn't anyone suggested Zometa infusions to you?
I'm having it to slow-down/prevent further bone-loss from my jaw.
Bren

Hey Bren

Hey Bren-
Sorry-I quess I hit a wrong key-but over here in the us they will not prescribe bone loss meds for people with jawbone loss because of fosamax and other things like that that have been accused of causing the bone loss they were prescribed to cure!
So-no help there.
How are you doing Bren-I have been so worried about you!
I am hanging in there and trying to stay calm and not go bonkers which is what I am famous for doing. I will have to have extensive surgery to replace my face if I lose more bone. Scary!! I am really scared and praying too. '
You are a miricle my Bren. You are. Please give me an update.
Do you still have to wait until 30th?

Debbie....did you have radiation as part of your treatment? My heart aches for you as you endure pain, and uncertainty and fear. I can hear the fear in your voice, but it sounds like you are coping well. I don't know that I would be taking this as well as you are. Keep writing. I'm learning lots, though our specific situations are different.

I do think that the leg bone (the fibula) is less likely to be rejected for some reason.....better blood supply, probably.....and the upper jaw is MUCH easier to work with, since it doesn't move, and since there are lots of bones up there to use for support.

It is, however, awfully nice to be all healed up......and well healed, thankfully....so it is difficult to think of going back into surgery and disrupting this good result.

I have a lot of thinking to do. Keep writing! Thanks.XO

You are right about being healed up. I had to have physical therapy to move my arm again after neck disection. I just hope I never have to have all that again. I did suffer from depression and my doctor just ignored me. He is brilliant but he has no bedside manor. Just all business and I did everything he said to do.
Think long and hard. You are doing the right thing by searching for answers ahead of time. I have found very few people that this has failed on but I quess they may not be on here. This is the only place I search usually.
Do you have other sights that offer such good information?
This one helps quite a bit but I feel like a loner sometimes because I am a failure!! HAHA That sounds like "poor me" but it's not. I am laughing at myself because it is the truth.
I had radiation for 3 days. My neck and jaw got so swollen that I could barely breath. They gave me a break, it went down, and they said they could put in a trach so I could finish. They also said the trach could get welded into my throat permanently. At that point, I could not eat or swallow anything but water and ice cream. I could not talk because of a lisp (former public speaker) so the thoughts of not being able to breath just sent my off the deep end. I quit, they yelled at me literally, and I go depressed. I thought I was going to die anyway and I did not want a trach. My husband cried but said he was behind me. I did know that I had nothing in the margins and nothing in my lymph nodes and that the radiation was insurance for micros hiding away.
To this day, I still have days that I wish I had finished and then I have days that I am happy I stood my ground when I read some of the things that happen years later. I don't know. I just remember the radiation oncologists telling me the odds were in my favor for it not to reoccur. He did say he would have to have chosen the same path. We don't know and all the doctors are different. I had 3 doctors tell me different statistics for me and then I took Brian's advice and quit listening to statistics. You can prove or disprove anything that way.
Keep on asking questions. I don't know of anyone who had a shoulder bone used? Anyone out there heard of this? Maybe that is why it failed?
Debbie
"

Debbie,, there are no failures in here, just some that have more to endure than others. I find what you have been thru as more than usual and you are very brave for posting the results. Maybe these will help someone else tha is going to go thru it. I try to read all of the posts because one never knows what we are likely to develope I have you in my prayers and will keep reading your posts.

You are so kind, and I might mention awfully brave. I am scared silly of getting a tooth pulled after all I have done. But when your jaw isn't hooked onto anything, it is so terribly scary. I don't think my dentists understand that my jaw is missing!!!HAHA
It is odd if you think of it.
THanks so much for your kind words. Only people on here understand it seems.
Debbie

Absolutely nothing odd on here Debbie---we worry about EVERYTHING!
I have had my stitches out and all oaky, but still have huge purple lump which may well turn to 'fungumating skin toumour' from all I've read. So I think Wednesday's results are a foregone conclunsion. So yup, I understand all worries/future procedures etc--I was a wreck before I had my biopsy stitches out--what a wuss!
Told you girl, remeber we HAVE CANCER and it sure alters your everyday take on things--and I'm sure, you may well even be right about your dentist!--But probably not--let's cross one bridge at a time--just a shame when more than one bridge appears on the horizon, doesn't it?
Aw---we'll get there--and we're allowed to moan sometimes--but we keep going, remeber???
Take care of yourself love,
Brenda x

Colleen,
I had the very surgery you are describing at the Mayo Hospital in Phoenix, Arizona in January 2003. The next day after surgery a physical therepist come to my roon and got me up to start wrlking. The fibula was taken from my left leg. I was told to step carefully as though I was walking on a soda cracker and didn't want to break it. After three days of approximately 15 minutes per day I was told I was ok to talk normally. My leg never did hurt. I have no problems with my leg what so ever. I ride horses every day and have experienced no problems. The only thing is I have a slight numbness on a small portion on the top of my foot. I walk fine, no weakness, and to mount a horse with a saddle I mount using my left leg and put my entire weight on the left leg while mounting. I was 60 years old at the time of my surgery. I was hospitalized for twenty days. I would do it again if it was necessary. IT wasn't bad at all. If I were in your shoes I wouldn't hesitate. Best of Luck You won't be sorry

Dear Hacklene,

Thanks soooo much for writing!

Did you have your surgery at the time of your cancer surgery? With a stay of 20 days in the hospital, I presume that is the case. Was the fibula taken from the same side as the surgery on your jaw? (the left?) Do you think it matters? (I have a knee problem on the surgery-side, and would want to use the other leg.)

Malka might have even more questions for you, since she is considering a lower jaw reconstruction, using the fibula.

My reconstruction would be the maxilla....the upper jaw.....along with a portion of the hard palate. The leg surgery would be the same, though I don't know how much tissue is removed from the leg for the mandibular repair. Skin and other tissue is taken along with the bone for the maxillary/palatal repair.

Does the numb area on your foot bother you? itch? tingle? distract you?

Has anyone with these repairs experienced problems with their ear as a result of the surgery? I was told that I might need a PE tube in that ear, since the eustachean tube might not function properly after the surgery. I did have that problem after my original surgery, and it has resolved, thankfully.

I am relieved to hear from someone who didn't have a problem with this surgery, though I do also appreciate hearing from those who did not have such good fortune with it.

Thanks! This is helping quite a bit!

Bren,
So glad you had your stiches out. I was waiting to her about you. I wish like Jim somehow we could magically see each other just once. Do they have a make a wish for older people?HAHA I am sure not. Wouldnt' that be a kick just once!!!! What a happy time. You are so brave, and I will think of you so much every day. I wish I could make us all better for a day.
Please keep me posted , the 30th is so close now Bren.
Debbie

Hi Colleen,
I am so glad that you found my experiences helpful. In answer to your new questions. Yes, I had cancer and reconstruction surgery at the same time. My entire lower jaw was replaced. With that in mind I don't think which fibula was used was important. The numb area on the top of my foot is very small and only noticeable when I touch the rest of the top of my foot. It just feels different than the rest of the top of my foot. On an everyday basis I don't even know it is there. Hopefully, this answers your questions. Should you or anyone else have any more questions please ask. I don't mind sharing. I think the hardest part of my cancer and surgery experience was the fear of the unknown. I didn't find this site until I was undergoing radiation. Anyway------

Best of Luck,

Thanks, Hacklene,

...one more: Do you have any trouble with your ear? My surgeon mentioned the possibility of needing to have a PE tube afterward because the eustachean tube might not function correctly. Perhaps because my surgery would be on the upper jaw instead of the lower, that was not an issue with you.

Colleen,
I had no problem with my ears. However, I had a lower jaw replacement. Not an upper jaw. Best of Luck. Keep us posted on what you decide. I wouldn't hesitate.

Hacklene

Hacklene.....I just realized that you said that you had your "entire lower jaw replaced." Wow! do you mean your ENTIRE lower jaw? all around? I can't imagine! It makes what I am considering sound simple. I have lost "only" five teeth on the right side, with the bone, and some of the adjacent hard palate. i have all four of my own incisors.

Did you have a trache? I'll bet you did, with all of that jaw surgery!! I guess you didn't have a neck dissection along with your jaw replacement. That would really be tootoo much!

You sound wonderful....so positive, and healthy. I am happy for you. I enjoy hearing from you. Keep adding things that you think of. thanks.

Colleen,
Yes I had my entire lower jaw replaced. But don't fret I am just fine. I have past the five year mark. I've changed my eating habit due to necessity. It is amazing how a person can adapt to a new situation when there isn't any choice. I am very healthy, have regained all the lost weight, and am strong. I don't have a PEG and all is well. So if I can do it so can you!

Malka, are you listening? I hope you are getting some of the info that you were needing. I am learning a lot, even though my surgery would be somewhat different. For you, it would be the same (though far less than Hacklene's!)

Hacklene, you must be quite a trooper! Thanks for sharing your story! XO

Yes, Colleen I am following this thread and am very encouraged by the responses.

My next appointment w. the ENT is the end of February. I am now going to call and request a consult at that time with the plastic surgeon who would be doing the reconstruction. Before that I will talk to Dr. Chiche my friend who is a prostodentist at LSU Dental school. Since it seems that dental work is most likely not going to be covered, I am going to ask if there is any program at the Dental School to which I could apply.

I would like to hear more from others about dental replacement following reconstruction. What was done about replacement of teeth? How long before you were able to eat like a person with a full mouth of teeth?

I see that I forgot to ask about using the iliac crest as a donor site. Does anyone out there have experience with this??

Malka