Fibula Flap Recovery

rickmail9
rickmail9 Member Posts: 6
in Head and Neck Cancer #1
My name is Rick and I was successfully treated with radiation for a squamous cell carcinoma that was located on the base of my tongue and tonsil wall in 2009. Since then, osteoradionecrosis has done a number on my jaw bone. I recently had about 4 inches of my lower left jaw resected and am now scheduled to meet with a surgeon at UVa regarding having a fibula flap procedure. I would really appreciate some insight from those who have had this procedure. Any regrets? What was your recovery time? Is it realistic to be back to work 90 days after the surgery? I've done a lot of reading, talked to surgeons, but there's no substitute for communicating with people who have actually lived through it. Your feedback will be greatly appreciated! Thanks, Rick

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Welcome Rick...
    No experience with your situation, but a few here have had various treatments with similar to you.

    Someone will chime in soon with some specifics for you I'm sure.

    We do have a SuperThread that has tons of excellent information and links. You might find something in there of use to you as well;

    SuperThread

    I was STGIII Tonsils, back in 2009...

    Again, welcome...

    Best,
    John
  • George_Baltimore
    George_Baltimore Member Posts: 303
    #3
    Skiffin16 said:

    Welcome Rick...
    No experience with your situation, but a few here have had various treatments with similar to you.

    Someone will chime in soon with some specifics for you I'm sure.

    We do have a SuperThread that has tons of excellent information and links. You might find something in there of use to you as well;

    SuperThread

    I was STGIII Tonsils, back in 2009...

    Again, welcome...

    Best,
    John

    I'm the negative one
    There are others on the board that will give you the positives. I will tell you the negatives. First off, I'm surprised they didn't do the whole thing in one operation. I had treatment for BOT back in 2004. To make a longer story shorter, necrosis set in around the first part of 2011. On June 24, 2011 my world turned upside down. I was on the operating table for 11 hours (they took out the section of mandible at that time too). In the process, my carotid artery was broken due to calcification so they had to call in a vascular surgeon to cap it off.

    They tried to get a blood supply to the newly placed fibula by doing a pectoral flap. Now I have limited use of my left arm. After the operation, things seemed to be going well. The gum granulated over the fibula like it was supposed to and everything was healing up nicely. About a month and a half later, my gum started opening up again. It was determined that the bone graft failed so they went back in and took the bone out but left the titanium plate. Once again, things started to heal. Another month and a half later the screw holding the plate on the right started working out causing a lot of pain. They went in again and removed the plate too.

    So what I am left with now is a disfigured face, a trach that was only supposed to be temporary, a swinging jawbone, I can't talk and I can't swallow. Some of this I attribute to the lymphedema that has remained. Also, my neck is very fibrotic. I'm in chiropractic treatment right now that is extremely painful to hopefully bust up the fibrosis. I go for my eighth treatment today. So far I have gotten a little side to side range of motion back. I'm hoping that the speech and swallowing problems will be helped by this treatment also. I can't blame the fibrosis on the operation but the lymphedema definitely came from it.

    Would I do it again now that I've had it done? Not sure that I would. My surgeons didn't give me the option of debridement of the bone. That is what I would try first. You however, are already past that point so, if I were you, I would go ahead with the fibula placement and keep my fingers crossed. Whatever you decide we'll be rooting for ya. Take care.
  • traceyd1
    traceyd1 Member Posts: 79 Member
    #4
    My husband had a fibula free
    My husband had a fibula free flap in 2/27/12. Surgery went well, except that his arteries were severely damaged from radiation, and the surgeons had difficulty getting good blood flow to the flap. They lost blood flow two days later and tried to salvage the flap. This was unsuccessful. So, back into surgery he went five days later using the OTHER fibula. The doctors used the arteries on the other side of his neck to get blood flow, and there were no other complications. He had a trach for another week, was completely NPO for two weeks, then was allowed a liquid diet. He was then slowly allowed to increase to a soft and then blended diet. PEG tube was removed about 12 weeks later. He went back to work half days (he has a desk job) 9 weeks later and was full time two weeks after that. The wound care was extensive. Make sure that your doctors point you in the proper direction for supplies. We were very lucky that a good friend happens to be a plastic surgeon and ordered supplies for us. My husband hasn't had any real complications. His stamina is not what it was, and his legs ache and swell sometimes. He did get physical therapy for a few months, as well as OT for lymphadema. He was well enough this week to take our youngest to Orlando, and handled all the walking well. Good luck with your decision
  • MJ70
    MJ70 Member Posts: 75
    #5
    My Free fibula Flap was very successful
    HI Rick:
    Don't know what to say about others but feel very lucky i had very successful results after reading their comments.... I am nine years out from my ssc base of my tongue...after five years i did get radionecrosis of my lower left mandable.. we watched it for a few months and found it getting worse and got to point that it had to be done...went in surgery at seven am and came out of recovery at 7:30pm total surgery time was probably 11 hours. They replaced my left jaw and used my right fibula with about a 10" vessel...spent 6 days in the Hospital and was walking down the hall the next afternoon..in my walking boot..At the time i was 69 and at 72 now i feel good..and do most anything i want at my age..... The time in the Hospital went very fast.. I truly was pretty much pain free..when they offered me pain pills i took them wether i needed them or not.. that was the fun part..

    My surgeons kept telling me repeatedly to go so very easy as it needs to heal..and I was very complient in doing that ..Depends how successfull your surgery is but if you work in administrative type work you will know how soon to go back..I was out and about in a couple weeks..I also do not know why they did not do the whole procedure all at once???
  • hwt
    hwt Member Posts: 2,328 Member
    #6
    MJ70 said:

    My Free fibula Flap was very successful
    HI Rick:
    Don't know what to say about others but feel very lucky i had very successful results after reading their comments.... I am nine years out from my ssc base of my tongue...after five years i did get radionecrosis of my lower left mandable.. we watched it for a few months and found it getting worse and got to point that it had to be done...went in surgery at seven am and came out of recovery at 7:30pm total surgery time was probably 11 hours. They replaced my left jaw and used my right fibula with about a 10" vessel...spent 6 days in the Hospital and was walking down the hall the next afternoon..in my walking boot..At the time i was 69 and at 72 now i feel good..and do most anything i want at my age..... The time in the Hospital went very fast.. I truly was pretty much pain free..when they offered me pain pills i took them wether i needed them or not.. that was the fun part..

    My surgeons kept telling me repeatedly to go so very easy as it needs to heal..and I was very complient in doing that ..Depends how successfull your surgery is but if you work in administrative type work you will know how soon to go back..I was out and about in a couple weeks..I also do not know why they did not do the whole procedure all at once???

    fibula
    my cancer was actually cancer of the lower mandible. 19 hour surgery replacing left mandible with right fibula and titanium. Pre-planned 4 days in induced coma 8 days more days icu then a couple more in regular room. Harder on my family than me. I don't recall much except the last couple of days in hospital. Hated the trach but did not leave hospital with it. No food or water those 2 weeks in hospital. Neck incision healed quickly. Leg had to be tended daily but healed nicely. Look into Mayo Rochester, I think they are doing something without the fibula now. I was back to work in less than 9 weeks if I remember correctly. But then had chemo/rads and was off again. No problems with flap. Am ready to start hyper baric chamber tx and dental work to replace those lower teeth. Had to wait 6mos post rad/chemo. Just got ok from insurance co. today. Apparently these HBOT are $2500 each and they want 30 before and 10 after. Good luck.
  • rickmail9
    rickmail9 Member Posts: 6
    #7
    George_Baltimore said:

    I'm the negative one
    There are others on the board that will give you the positives. I will tell you the negatives. First off, I'm surprised they didn't do the whole thing in one operation. I had treatment for BOT back in 2004. To make a longer story shorter, necrosis set in around the first part of 2011. On June 24, 2011 my world turned upside down. I was on the operating table for 11 hours (they took out the section of mandible at that time too). In the process, my carotid artery was broken due to calcification so they had to call in a vascular surgeon to cap it off.

    They tried to get a blood supply to the newly placed fibula by doing a pectoral flap. Now I have limited use of my left arm. After the operation, things seemed to be going well. The gum granulated over the fibula like it was supposed to and everything was healing up nicely. About a month and a half later, my gum started opening up again. It was determined that the bone graft failed so they went back in and took the bone out but left the titanium plate. Once again, things started to heal. Another month and a half later the screw holding the plate on the right started working out causing a lot of pain. They went in again and removed the plate too.

    So what I am left with now is a disfigured face, a trach that was only supposed to be temporary, a swinging jawbone, I can't talk and I can't swallow. Some of this I attribute to the lymphedema that has remained. Also, my neck is very fibrotic. I'm in chiropractic treatment right now that is extremely painful to hopefully bust up the fibrosis. I go for my eighth treatment today. So far I have gotten a little side to side range of motion back. I'm hoping that the speech and swallowing problems will be helped by this treatment also. I can't blame the fibrosis on the operation but the lymphedema definitely came from it.

    Would I do it again now that I've had it done? Not sure that I would. My surgeons didn't give me the option of debridement of the bone. That is what I would try first. You however, are already past that point so, if I were you, I would go ahead with the fibula placement and keep my fingers crossed. Whatever you decide we'll be rooting for ya. Take care.

    Fibula Flap
    George:

    Thanks for your quick reply. I really appreciate you taking the time to convey your experiences. I didn't receive your comments as being negative, rather they show that this procedure like many others, is subject to variables that can't be predicted. Your comments are invaluable to me and I thank you. I don't like surprises and so far I've had them after both of my surgeries. I don't think I need to expand on that as I'm certain you know exactly what I mean. It's obvious that you're tough, smart and determined. You've made it through a nightmare and will continue to move forward with optimism. It's just the way you're built. You should be proud of yourself. Thanks again for your help.

    Rick
  • rickmail9
    rickmail9 Member Posts: 6
    #8
    hwt said:

    fibula
    my cancer was actually cancer of the lower mandible. 19 hour surgery replacing left mandible with right fibula and titanium. Pre-planned 4 days in induced coma 8 days more days icu then a couple more in regular room. Harder on my family than me. I don't recall much except the last couple of days in hospital. Hated the trach but did not leave hospital with it. No food or water those 2 weeks in hospital. Neck incision healed quickly. Leg had to be tended daily but healed nicely. Look into Mayo Rochester, I think they are doing something without the fibula now. I was back to work in less than 9 weeks if I remember correctly. But then had chemo/rads and was off again. No problems with flap. Am ready to start hyper baric chamber tx and dental work to replace those lower teeth. Had to wait 6mos post rad/chemo. Just got ok from insurance co. today. Apparently these HBOT are $2500 each and they want 30 before and 10 after. Good luck.

    Thanks!
    Thanks to all of you who have replied to my initial note! The information you all are conveying is helping me more than you know. I really appreciate you taking the time to write. If you would like to share anything with me that you don't want posted to the forum, you can email me at rickmail9@verizon.net.

    Thanks Again!!!

    Rick
  • kkw62
    kkw62 Member Posts: 12
    #9
    My husband had the same
    My husband had the same cancer in the same area and completed 35 rad treatments and 4 chemo with cysplatin nearly 5 yrs ago. About a yr after treatment, he started having issues with his teeth. We were sent to the University of Iowa where they pulled 4 teeth and he did 30 hyperbaric treatments.He started developing an infection every once in awhile always in the same area. It just kept getting worse and finally after my complaining about it for 6 mos they took an xray and determined his jaw was fractured. Last Sept they replaced the left jaw from just to the left of his chin all the way to where the jaw hinges. The surgery was 13.5 hrs; one day in ICU; 10 days in hospital; had trach installed which he came home with and also feeding tube - those were removed probably within 2-3 wks. His bone came from his right leg including the vein and muscle to build a new gum - therefore his leg incision was very extensive. The leg did not require a skin graft but that was a possibility. He was probably off work a total of 6-8 wks.Biggest complaint has been his leg - he often wears a support sock especially on days when he will be on his feet alot. It did take quite a while for the leg incision to heal and it's best kept moist to avoid cracking open. In May this year he started developing infection on the right side of his jaw. Originally he was given an RX for the infection but his regular dentist noticed an opening in his mouth floor and infection continuing even after the RX was finished numerous times. The beginning of Dec he will be having this surgery again for the other side. It is not something either of us are looking forward to but....he can't take the RX forever and we feel blessed considering what the alternative is. Best wishes!

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