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Jaw replacement and osteoradionecrosis

Debi16043's picture
Debi16043
Posts: 49
Joined: Aug 2011

first I really appreciate each if you.  Here's my new situation I'd like to know if there is anyone out there going thru this.

 

3 years ago I had segmented mandilbectomy, fibula free flab to reconstruct jaw bone.  All teeth removed and implants put in.  Six weeks radiation.  no reoccurrence of scc so far.  I was told last week that I have ORN.  The radiation killed the new jaw bone (made from fibula) as well as more if remaining mandible.  My original  was sixteen hours long at md Anderson in houston texas.  Now I must have same surgery again.  They will remove my fibula from my other leg to make another jaw bone.  I have to have the trach, feeding tube and whole bit again.  My question is has anyone out there had this same thing. im wondering how ill do with fibulas missing from both legs.  It's been three years and my leg with missing fibula makes me fall a lot (they say it's good it's just my new normal) .  Lol

 

thanks and anyone willing to share what they went thru with this surgery. M

 

 

TracyLynn72's picture
TracyLynn72
Posts: 747
Joined: May 2013

You have been through an awful lot!  I'm sorry that you're having to have more surgery.  My lower left jaw was removed (tumor had broken through it) but my surgeon used a titanium plate as the replacement.  I'm an ol' metal head now, but he opted to not to the fibia surgery for me.  I hope everything goes well and the healing is quick for you.

traceyd1
Posts: 36
Joined: Nov 2012

My husband, went through this procedure twice.  He had radiation prior to surgery and the arteries in his neck were damaged.  His first surgery failed after two days and the flap was removed.  A few days later he had the other fibula placed in his jaw.  He has had no problems with balance, maybe because with both fibulas gone the balance equalled out?  He so far has had no problems and is to get his teeth some time in the next month.  Because the bone was never radiated, it wasn't damaged by the radiation, so fingers crossed, we won't have any problems.  Hopefully this will be the case for you too, since the new fibula hasn't received radiation.

Good luck and God Bless.

Tracey

Debi16043's picture
Debi16043
Posts: 49
Joined: Aug 2011

Tracey thanks so much for your reply.  I'm relieved to know his balance is still good.  

Mikemetz's picture
Mikemetz
Posts: 355
Joined: Nov 2011

Having had my own mandibular resecting in May, and what that put me through, all I can say is that it just ain't right that you are heading for a second procedure.  Specific to balance issues, my left foot (the side they took the fibula from) is still quite unstable--it feels like I could sprain my ankle at any time.  I have not fallen yet, but have had a lot of times when my balance came off a bit and I had to catch myself.  It is getting better, but still not totally healed yet.  I am going to PT and that has helped.

Before the surgery I was told many times that "It's only your fibula--it's non-weight bearing. Don't worry."  If that is true, then it must be the muscle tissue getting weakened to cause the reduced balance.  Something is going on, but I can't say for sure.

Good luck with your second procedure--you are in my thoughts.

Mike

 

Debi16043's picture
Debi16043
Posts: 49
Joined: Aug 2011

Mike I have same problem and my plastic surgeon told me same thing he said you won't have any issues with your missing fibula, just can't play football, lol.  Well mine is totally healed as I had my surgery June 2011 and I do have a few issues.  Of course not to complain but if I am hurrying and just turn a little to sharp I fall.  I'm not complaining it's just the doctor must not be aware of that.

 

doctor said I will have surgery over but I go see my surgeon tomorrow so I'll know more.  I don't understand how I have ORN.  when I look up definition it says it means you have a bone coming thru skin or open wound and I don't have either.  I guess it's because my mandible died from radiation and I have nonunion of bone.  Well see.

Debi16043's picture
Debi16043
Posts: 49
Joined: Aug 2011

Mike do you have to have radiation now?

Mikemetz's picture
Mikemetz
Posts: 355
Joined: Nov 2011

No more rads for me.  I had them in 2009, which is what led to the jaw resecting.  So, the bone there is now 'clean' and I should be good to go forever.

Mike

 

donfoo's picture
donfoo
Posts: 1327
Joined: Dec 2012

Mike,

Wish you well in healing from the surgery and very appreciative of your active participation here on the topic of ORN. Thanks, don

Mikemetz's picture
Mikemetz
Posts: 355
Joined: Nov 2011

My ORN started very soon after rads and then kicked in at a steady pace for 4-5 years.  I had no choice but to learn as much as I could for myself as it progressed to the inevitable resection.  So I am happy to pass that along to anyone who has their own questions about it--just as so many others here share their experience and knowledge on all aspects of HNC.

mike

 

MJ70
Posts: 65
Joined: Nov 2010

 

 

 

 

 

debi:  

sorry to hear of you having the second surgery;; I was aware of the need to have it done again but was never in a need ...it has been 5 and a half years for my surgery..all has been good as to the surgery..just have trouble swallowing now...was told they had to move lots of muscules around and importance  to excercise from my swallowing clinic which i do..had a peg put in a month ago and will have a mickey button  put in to replace the peg in  aweek or so..balnce is a little problem..could be age as i will be 74 in  few months ..dry mouth is a problem for me...i use all the good stuff i know of...ie  bioclean. restore by act for dry mouth..and the stopper  four...any help on this issure i am open ..Good lucl on the second surgery..

 

mel

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

I didn't have balance issues. I fell once during radiation/chemo but attributed that to the pain meds. Did use a walker while leg was healing. I recall that they handmade me a boot to sleep in following my surgery to prevent drop foot. Apparently, it worked. 

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