Seeking feedback from anyone who has undergone jaw replacement

Judy512
Judy512 Member Posts: 11
in Head and Neck Cancer #1

 

I've already communicated with some really wonderful people on this site & hope to connect with more.  It was suggested I open up another Forum Topic to engage more members.

I have suffered from jaw issues as my jaw was radiated when I was 17.  I'm now 54 & as time goes by the joy of a radiated jaw does not get any better.

But what did help:  My jaw was fused by radiation...so had approx 1/4" opening between my teeth for almost 10 years until I got a condylectomy.  The condyle (rounded jaw joint) on the left side was removed to offer a wider opening which it did.  I will never be able to bite into an apple, but that's ok...it's good enough.

Because dental care was & continues to be a challenge as dentists and oral surgeons still have limited access, I had all my teeth extracted (top & bottom) on the left side.  It's not visibly noticable, just a chewing challenge.  I usually don't eat meals, but nibble on small things throughout the day.  In order to successfully have all the extractions, I underwent hyperbaric treatment before and after -- ensuring the compromised gum tissue healed well, which it did.

What my current issue and concern is, and I wonder if you have explored this is "jaw replacement".  I had 2 MRIs last year which revealed that my jaw has atrophied.  Delightful new, no doubt.  What seems to be (or so I've been told) is the fact that this can be a life-changing procedure.  I'm continuing to explore this for a couple of reasons.  The surgeon I spoke to planned to use titanium.  I need to investigate if this is reasonable to use -- need to check how long the titanium will stand up.  I heard from someone who had this done that it may only last 10 years.  10 years may seem like a long time, but the expense is crazy.  I was quoted $300-$400k.  I have exceptional insurance, but will still likely be left with $40k.  

So you have to weigh the life of surgery along with your willingness to pay a premium $$ (even if the surgery does not live up to your expectations).

I am currently gathering resources to use on my blog: judyryan.wordpress.com for childhood cancer survivors.  A pocket of truly unserved individuals.  To be honest, I don't need emotional support which so many organizations offer, I need sound "medical" advise, which seems to be lacking.

Best to everyone on this site! Smile

Judy

 

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    Hi Judy....

    I'm not going to be much help, as I didn't have jaw replacement.  Just wanted to tell you to hang in there till someone who has had one gives you some answers....there are several here who have had the surgery...titainium and bone replacements.

    p

  • wmc
    wmc Member Posts: 1,804
    #3
    Can't help but........

    Is there a dollar amount that kicks in and then the insurance pays 100% I have 80/20 and a $3000 deductable then they pay 80% but when I'm out of pocket $6800, they then pay all 100% in network. You might check into that. Having you pay $40K is a lot to concider.

    Bill

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #4
    My jaw

    1/4 of my lower jaw had to be removed due to a tumor that had broken through it.  It was replaced with a titanium plate. I also have no hinge on that side, just the plate.  I'm 42 years old and had this done almost 2 years ago.  I have had no issues so far and I ask my surgeon how long of a "fix" is this.  He says that he is confident I should have NO issues with it.  I don't crunch on ice by any means or eat really "hard" things too much, but I really don't have too many issues with it.  I do not have lower teeth, so I can only chew on the right side and that is forever.  Implants were not an option as there is no jawbone to attach anything to.  I wish you the very best with whatever you decide to do.  I had to get Medicaid to help me with all of my bills and I still have three that I will be making payments on for at least another year or so.

     

    My surgeon is AMAZING!!  Dr. Kamerer with Charlotte Eye, Ear, Nose and Throat in Charlotte, NC.  I'm not sure where you are located, but I love that man!

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    praying for God to help you

    praying for God to help you make your decision.  This is a serious procedure and I wish you the very best and I know God will take care of you.

    God bless you,

    dj

  • hwt
    hwt Member Posts: 2,328 Member
    #6
    debbiejeanne said:

    praying for God to help you

    praying for God to help you make your decision.  This is a serious procedure and I wish you the very best and I know God will take care of you.

    God bless you,

    dj

    Judy

    I am puzzled as to what will be accomplished with the jaw replacement for you. I had it but my cancer was actually in the mandible.  This is nothing to sneeze at, My surgery was 01/2012 and was 19 hours long. Cosmetically it left me a mess. In 2014 the titanium became infected and had to be removed. Most recently, I had to have the bone (my fibula) removed. I have a fistula following and just had surgery on it last month.Waiting to see if heals. Do lots of research and think long and hard on your decision. 

    best wishes

  • Judy512
    Judy512 Member Posts: 11
    #7
    hwt said:

    Judy

    I am puzzled as to what will be accomplished with the jaw replacement for you. I had it but my cancer was actually in the mandible.  This is nothing to sneeze at, My surgery was 01/2012 and was 19 hours long. Cosmetically it left me a mess. In 2014 the titanium became infected and had to be removed. Most recently, I had to have the bone (my fibula) removed. I have a fistula following and just had surgery on it last month.Waiting to see if heals. Do lots of research and think long and hard on your decision. 

    best wishes

    Appreciate your feedback...

    Risks are what I need to know.  I was considering Jaw replacement because I started to experience odd sesations on the left side of my jaw and when MRIs showed my complete jaw has atrophied, my long-term eating habits may turn into a complete liquid diet.  We're talking about almost 40 years of after cancer radiation treatment.  Not only has my life expectancy been remarkable, but also suviving the wave of multiple other "head" issues which are slowing deteriorating over time  A jaw replacement seemed to be a somewhat reasonable restoration of a condition that is on its last legs.

    I am so sorry for all the set-backs you've had to deal with.  It must be very frustrating and painful.

    Sincerely hope all will heal and be well.

    Thank you :)

    Judy

     

     

     

     

     

  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    Judy512 said:

    Appreciate your feedback...

    Risks are what I need to know.  I was considering Jaw replacement because I started to experience odd sesations on the left side of my jaw and when MRIs showed my complete jaw has atrophied, my long-term eating habits may turn into a complete liquid diet.  We're talking about almost 40 years of after cancer radiation treatment.  Not only has my life expectancy been remarkable, but also suviving the wave of multiple other "head" issues which are slowing deteriorating over time  A jaw replacement seemed to be a somewhat reasonable restoration of a condition that is on its last legs.

    I am so sorry for all the set-backs you've had to deal with.  It must be very frustrating and painful.

    Sincerely hope all will heal and be well.

    Thank you :)

    Judy

     

     

     

     

     

    Hi Judy

     

    What ever way you go please keep us up to date; I will see my ENT tomorrow morning and I am hopping she can tell me more about this Condylectomy. I am at the point of trying anything to get just a little more opening in the jar. It is hard just trying to get a toothbrush in my mouth, I think I am down to ¼ inch of opening now.

     

    Thanks

    Tim Hondo

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #9
    Hawk711

    Hi Judy - Hawk711 had this done.  Have you connected with him yet? 

    I can't offer any insights yet.  Seeing my dentist every three months and hoping for the best.

    Deb

  • hawk711
    hawk711 Member Posts: 566
    #10
    D Lewis said:

    Hawk711

    Hi Judy - Hawk711 had this done.  Have you connected with him yet? 

    I can't offer any insights yet.  Seeing my dentist every three months and hoping for the best.

    Deb

    Hi Judy

    I sent you a PM, check it out and then we can talk off line.

    Steve

  • traceyd1
    traceyd1 Member Posts: 79 Member
    #11
    Judy,
    My husband had this

    Judy,

    My husband had this surgery in Feb. 2012.  I agree with other posters that this surgery is pretty intense.  His surgery was 18 hours, then had to be re-done a week later using the other fibula, which was a 14 hour surgery.  Physical therapy was required afterward.  He has had no issues since.  Cosmetically, he looks great, as they were able to do all incisions through the neck.  He received dental implants this past fall, as the bone from the fibula had never been radiated.  He eats crunchy foods like chips, cookies, etc., but doesn't really eat anything very hard.  He still has difficulties with red meat, but this is a swallowing problems, not a chewing problem.  Best of luck to you.

    Tracey

  • Judy512
    Judy512 Member Posts: 11
    #12
    Thank you Tracy for the feedback!

    Sorry for the delay.  I very much appreciate knowing the outcome of your husband's surgery.  I have decided, for now, to put a hold on this.  I've undergone so many reconstuctive surgeries to fix function and repair damage on the left side of my face -- with outcomes that either failed or made matters worse.

    I will ride the wave for now.  Get a Ninja or Vita Mix blender to offset any eating issues.  

    Thank you again for your feedback :)

    Judy

     

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