Jawbone Replacement due to disintegration of radiated jawbone

sweetgammy
sweetgammy Member Posts: 24 Member
I have done tons of research on the best doctor and the best medical facility to have this procedure done.

I have very strong opinions about this but hoping not to offend anyone would be willing to share them if there is interest. I was initially diagnosed with Stage 4 oral cancer of the tongue in 2002, I have had 5 surgeries since then at the best hospitals and with the best surgeons in chicago.

Being doubly radiated (ugh!) my jawbone started to deteriorate in 2011 to the point that I was in indescribable pain for the entire year. I had several "holes' in my chin that drained fluid constantly. I was a sight!

I am at this moment 8 weeks post surgery for a complete jawbone replacement and neck skin replacement! I was fortunate to have Dr. YU (Reconstructive Surgeon) at MD Anderson with Dr. Meyer (Otolaryngologist and surgeon) as team member! I had put off the surgery for an entire year because of fear! Fear of losing my speech and my ability to swallow liquids to some degree. Fear of the pain and surgery itself. Fear of yet another medical failure! Nevertheless it ws the ast stop !

I sit here a complete success having no pain for the first time in years. I don't want to take up a lot of space on this blog with such a specific topic but if anyone would like to contact me directly please feel free to do so: marianne2428@yahoo.com
Sweetgammy
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Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    congratulations on your successful surgery
    I am happy to hear it worked out so well for you.

    Pat
  • phrannie51
    phrannie51 Member Posts: 4,716
    Oh....I'm so happy for you!!
    Congrats on the great surgery...I know there'll be somebody wanting to contact you...and find out who, what, and where!!

    p
  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    complicated
    sweetgammy,

    Well that’s knocking the ball out of the park. It is so nice to hear of a difficult success story.

    Keep healing,

    Matt
  • tommyodavey
    tommyodavey Member Posts: 726 Member
    CivilMatt said:

    complicated
    sweetgammy,

    Well that’s knocking the ball out of the park. It is so nice to hear of a difficult success story.

    Keep healing,

    Matt

    Great News
    At first I was shocked at what you endured, then you say it was a total success and you are pain free! Such great news Sweetgammy and you so deserve it.

    Wishing you the best,

    Tom
  • robinleigh
    robinleigh Member Posts: 297
    WOW
    How nice of you to offer this information. I would like to make you a friend for future advice if you wouldn't mind. My husband is suffering from osteoradionecrosis and at this point the doctors are just watching it closely. He is in varying degrees of pain but, it is manageable thus far.
    Unfortunately, he is in treatment for a distant metastasis so we really have to focus on that battle for now.
    So happy for your successful surgery and wish you all the best from here out!!!
  • katenorwood
    katenorwood Member Posts: 1,912
    Great news !
    Hello !
    Have heard some very great positives about MD Anderson as a whole. I have other friends who are doctoring with them. I am so happy that all went so swell for you ! Continued success with healing. Warmest regards, Katie
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    Great news for you--some hope for me
    Congratulations on coming through such a complicated and risky (in terms of success rate) procedure with no pain. I'm in a wait-and-see period with my ORN. I had a debridement 6 weeks ago and the docs are thinking that I can avoid a jaw resecting procedure.

    I can relate to the fear you had about the jaw surgery--especially from some of the stories we've seen here. Before my debridement I was terrified that I could be heading down that same road--and just the thought of it was unbearable. I have another follow up appointment next week and I have my fingers crossed that the doc thinks I'm still making good progress from the debridement.

    Way to go!

    Mike
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Mikemetz said:

    Great news for you--some hope for me
    Congratulations on coming through such a complicated and risky (in terms of success rate) procedure with no pain. I'm in a wait-and-see period with my ORN. I had a debridement 6 weeks ago and the docs are thinking that I can avoid a jaw resecting procedure.

    I can relate to the fear you had about the jaw surgery--especially from some of the stories we've seen here. Before my debridement I was terrified that I could be heading down that same road--and just the thought of it was unbearable. I have another follow up appointment next week and I have my fingers crossed that the doc thinks I'm still making good progress from the debridement.

    Way to go!

    Mike

    Mike
    how are you feeling? My guess is that once you show that you have started healing, you will continue to heal. But thats just speculation on my part.


    Pat
  • sweetgammy
    sweetgammy Member Posts: 24 Member

    WOW
    How nice of you to offer this information. I would like to make you a friend for future advice if you wouldn't mind. My husband is suffering from osteoradionecrosis and at this point the doctors are just watching it closely. He is in varying degrees of pain but, it is manageable thus far.
    Unfortunately, he is in treatment for a distant metastasis so we really have to focus on that battle for now.
    So happy for your successful surgery and wish you all the best from here out!!!

    jawbone replacement
    Hi Robin!

    First of all...how is your husband doing?
  • sweetgammy
    sweetgammy Member Posts: 24 Member

    jawbone replacement
    Hi Robin!

    First of all...how is your husband doing?

    jawbone replacement update!
    Hello everyone!
    I've not logged on for awhile as I have been so busy with follow up appointments after jawbone replacement surgery in April. I have been seeing a speech therapist several times a week and a swallow expert several times a week plus twice a week I have a massage of the surgical area to reduce scar tissue and increase blood flow. I'm so thankful that my recovery is going so well but I'm exhausted going from one appointment to the other.....I am not complaining!!I also am slowly going off all of my pain meds. prior to the surgery I was taking a lot! A patch, Norco, oxycodone and drinking morphone! Wow! I was in so much pain caused by the disintergration of the jawbone plus all the infections one after another! I had to have someone drive me to the hospital every day for antibiotic infusions etc. etc. etc. You all know what its like! Well coming off the pain meds was NOT easy. It's been hard but I am now only taking a few Norcos now and then. I have found that my low blood pressure (fainting spells) has gone away as I reduced the pain meds. According to my doctors the pain meds can lower blood pressure. It was getting to the point that I was afraid to stand up after sitting for awhile or lying down. All gone now! there are so many reasons when one is so ill to be depressed but I hadn't thought how much the pain meds, although controlling the pain, were also contributing to depression. I still take a mild doses of Lexipro.

    So all is going well and I am headed back to Houston for the "debulking" procedure in the middle of September. This is supposed to be an easy procedure lasting only about 2-3 hours and I will be done with that 'goiter" look under my chin! i would like to know how everyone else on this "jawbone reconstruction" discussion board is doing! Look forward to hearing from everyone! Again, if you're uncomfortable commenting or would like to contact me personally my e-mail is marianne2428@yahoo.com I look forward to catching up with you and this topic!
  • George_Baltimore
    George_Baltimore Member Posts: 303

    Mike
    how are you feeling? My guess is that once you show that you have started healing, you will continue to heal. But thats just speculation on my part.


    Pat

    Happy for you
    Gammy, I am truly happy that your surgery went alot better than mine. I still can't swallow, I have a disfigured face and I can't talk. While the lymphedema has gone down quite a bit, it is still pretty prevalent. One of these days I'll get up enough nerve to post a picture although, if I do, it might stop alot of people from considering the surgery.
  • hwt
    hwt Member Posts: 2,328 Member

    Happy for you
    Gammy, I am truly happy that your surgery went alot better than mine. I still can't swallow, I have a disfigured face and I can't talk. While the lymphedema has gone down quite a bit, it is still pretty prevalent. One of these days I'll get up enough nerve to post a picture although, if I do, it might stop alot of people from considering the surgery.

    Jaw reconstruction
    My cancer was actually in my lower jaw. January 2012 the mandible was removed and replaced with titanium and the fibula from my leg. A 19 hour surgery, 4 days in coma and then 2 weeks in hospital followed by rads and chemo. Finished tx mid-May and have had 1 CT scan with contrast that was clean. Most of lower teeth were removed during surgery. Scheduled to start implants in November but not til I do 30 days in hyperbariac pressure chamber 2 hours a day. I am currently doing neck massage therapy for lymphedema and find it delightfully relaxing and it seems to help. I have good enough range of motion in my neck. The feeling that I had a bag of nickels on my chin is getting better. Swallowing hasn't been an issue and I am able to talk about as well as anyone without all of their teeth. When I wake of a morning my neck is very hard so hopefully when they get the scar tissue broken down that will ease.
    George, where did you have your surgery?
  • George_Baltimore
    George_Baltimore Member Posts: 303
    hwt said:

    Jaw reconstruction
    My cancer was actually in my lower jaw. January 2012 the mandible was removed and replaced with titanium and the fibula from my leg. A 19 hour surgery, 4 days in coma and then 2 weeks in hospital followed by rads and chemo. Finished tx mid-May and have had 1 CT scan with contrast that was clean. Most of lower teeth were removed during surgery. Scheduled to start implants in November but not til I do 30 days in hyperbariac pressure chamber 2 hours a day. I am currently doing neck massage therapy for lymphedema and find it delightfully relaxing and it seems to help. I have good enough range of motion in my neck. The feeling that I had a bag of nickels on my chin is getting better. Swallowing hasn't been an issue and I am able to talk about as well as anyone without all of their teeth. When I wake of a morning my neck is very hard so hopefully when they get the scar tissue broken down that will ease.
    George, where did you have your surgery?

    GBMC
    My surgery was done at Greater Baltimore Medical Center. My two main surgeons are associate professors at Johns Hopkins. The head and neck cancer center at GBMC is somehow connected with Johns Hopkins even though GBMC, to my knowledge, is not. Had a swallow study done again yesterday. It looks like the dilations aren't going to do any good. The bone in my throat is not moving forward to start the swallowing mechanism. This is either due to the severe fibrotic condition of my throat or the lymphedema that still remains in my lower face. My swallow therapist is going to check into the study I had done before my surgery last year to see if the bone was moving then. I'm praying that it's not moving because of lymphedema. At least that might go away. There is nothing I can do about the fibrosis. If it's due to the fibrosis, my only option is to have a laryngectomy and that's kind of risky due to the condition of my neck. Decisions, decisions.
  • hwt
    hwt Member Posts: 2,328 Member

    GBMC
    My surgery was done at Greater Baltimore Medical Center. My two main surgeons are associate professors at Johns Hopkins. The head and neck cancer center at GBMC is somehow connected with Johns Hopkins even though GBMC, to my knowledge, is not. Had a swallow study done again yesterday. It looks like the dilations aren't going to do any good. The bone in my throat is not moving forward to start the swallowing mechanism. This is either due to the severe fibrotic condition of my throat or the lymphedema that still remains in my lower face. My swallow therapist is going to check into the study I had done before my surgery last year to see if the bone was moving then. I'm praying that it's not moving because of lymphedema. At least that might go away. There is nothing I can do about the fibrosis. If it's due to the fibrosis, my only option is to have a laryngectomy and that's kind of risky due to the condition of my neck. Decisions, decisions.

    George
    Sorry you have had such a difficult time. This whole ordeal is a nightmare by itself without adding complications. My heart goes out to you and I will pray that your swallowing kicks in again. Have you had any neck massage therapy for the lymphedema? It has to be prescribed but then your insurance should pay for it. I just started it but it seems to help the lymphedema. God Bless!
  • hwt
    hwt Member Posts: 2,328 Member

    GBMC
    My surgery was done at Greater Baltimore Medical Center. My two main surgeons are associate professors at Johns Hopkins. The head and neck cancer center at GBMC is somehow connected with Johns Hopkins even though GBMC, to my knowledge, is not. Had a swallow study done again yesterday. It looks like the dilations aren't going to do any good. The bone in my throat is not moving forward to start the swallowing mechanism. This is either due to the severe fibrotic condition of my throat or the lymphedema that still remains in my lower face. My swallow therapist is going to check into the study I had done before my surgery last year to see if the bone was moving then. I'm praying that it's not moving because of lymphedema. At least that might go away. There is nothing I can do about the fibrosis. If it's due to the fibrosis, my only option is to have a laryngectomy and that's kind of risky due to the condition of my neck. Decisions, decisions.

    George
    Sorry you have had such a difficult time. This whole ordeal is a nightmare by itself without adding complications. My heart goes out to you and I will pray that your swallowing kicks in again. Have you had any neck massage therapy for the lymphedema? It has to be prescribed but then your insurance should pay for it. I just started it but it seems to help the lymphedema. God Bless!
  • George_Baltimore
    George_Baltimore Member Posts: 303
    hwt said:

    George
    Sorry you have had such a difficult time. This whole ordeal is a nightmare by itself without adding complications. My heart goes out to you and I will pray that your swallowing kicks in again. Have you had any neck massage therapy for the lymphedema? It has to be prescribed but then your insurance should pay for it. I just started it but it seems to help the lymphedema. God Bless!

    Yep
    I started with lymphedema massage treatments around November of last year. It reduced the swelling quite a bit but not all the way. I stopped going, I think it was around May, because it didn't seem to be helping anymore.
  • Debi16043
    Debi16043 Member Posts: 53
    Update
    Well how are you doing now?
  • luvofmylif
    luvofmylif Member Posts: 344

    Yep
    I started with lymphedema massage treatments around November of last year. It reduced the swelling quite a bit but not all the way. I stopped going, I think it was around May, because it didn't seem to be helping anymore.

    My heart goes out to you for
    My heart goes out to you for all that you go thru. I am hoping and praying things get better for you.

    Joan
  • Tiger88
    Tiger88 Member Posts: 1
    Our Dilemma
    My sister in law has just been diagnosed with stage 4 cancer in her lower jaw but what is complicating this is that she is also mentally retarded - about 12 year old though she is 60 years old and she has severe sight problems (+1200 degrees) and hearing deficiency and slightly slurred speech

    She will require removal of her lower jaw and reconstruction with thigh bone and then eventually dentures - similar to what you have experienced

    there are 2 camps in the family

    Camp One - against surgery due 'why make her suffer' and 'what for?' and let her die in 6 months to one year and avoid all the post operative care

    Camp Two - go for surgery and extend her life even though long term removal of cancer is only suggested at 50/50

    Reason why I am writing is for your personal input into how difficult the recovery process is and whether it is worth it considering the extra circumstances of her being mentally handicapped?

    I would add that she is not unhappy and lives a simple life with her pet birds, her daily routine and her love of going out to eat (something that she will not be able to do for what I think will be 6 months)

    Another consideration is my son and my daughter's weddings which will happen over the next 2 years and it would be nice for them to have her around for that

    Your frank comments?

    thanks
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Tiger88 said:

    Our Dilemma
    My sister in law has just been diagnosed with stage 4 cancer in her lower jaw but what is complicating this is that she is also mentally retarded - about 12 year old though she is 60 years old and she has severe sight problems (+1200 degrees) and hearing deficiency and slightly slurred speech

    She will require removal of her lower jaw and reconstruction with thigh bone and then eventually dentures - similar to what you have experienced

    there are 2 camps in the family

    Camp One - against surgery due 'why make her suffer' and 'what for?' and let her die in 6 months to one year and avoid all the post operative care

    Camp Two - go for surgery and extend her life even though long term removal of cancer is only suggested at 50/50

    Reason why I am writing is for your personal input into how difficult the recovery process is and whether it is worth it considering the extra circumstances of her being mentally handicapped?

    I would add that she is not unhappy and lives a simple life with her pet birds, her daily routine and her love of going out to eat (something that she will not be able to do for what I think will be 6 months)

    Another consideration is my son and my daughter's weddings which will happen over the next 2 years and it would be nice for them to have her around for that

    Your frank comments?

    thanks

    Hi Tigger
    Yours is a tough situation, one where there are no simple answers. It is a very difficult surgery under the best of circumstances, and it is very likely you are talking about radiation afterwards. Radiation is potentially harder than the surgery itself. The surgery proposed takes 10-14 hours as a rule. It involves a temporary tracheostomy and placement of a feeding tube, in addition to removal of the cancer including jawbone, and placement of a bone graft from the lower leg to rebuild the structures lost. Best case, this results in 8-10 days in the hospital, followed by convalescence at home that will require assistance for 1-2 months. I say 1-2 months if no radiation is done. If there is postoperative radiation, it will be five days a week for a total of about 6-7 weeks. The radiation is generally followed by a few months of gradually decreasing disability. That disability is generally inability to eat requiring assistance with feeding through a tube, as well as fairly profound weakness requiring a significant effort at rehabilitation.

    If all goes well, life will gradually return to fairly normal over the first year post treatment, but it will likely take every bit that long to get there. Everyone will have an opinion on this, but it will be opinion only, not anything carved in stone. I wish you the wisdom to chose wisely, and the courage to follow through. This is a difficult path under the best of circumstances.

    Pat