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!