Has anyone had a jaw replacement due to ORN osteoradionecrosis. I am a survivor of SCC for ten years. Have had tongue resection, right side nodes removed, 42 radiation treatments, much dental work, $$ and now my crowns are loose only after a year and they tell me I will need surgery to replace the bone. I go monday to a maxillofacial surgeon. The more I research it the scarier it gets. Hyperbaric treatments?? How long of a process is this and what should I expect?
Maria

Maria...welcome to OCF. There are peopel on there that have Hyberbaric treatments. I'm sure they will post and let you know what to expect. Do you already have an oral surgeon that you see, or is your Monday appointment the first time you will meet them? I see you are in NJ and I am too. Were in NJ are you. I know of 2 awesome oral surgeons in PA. Just a thought if you are not already established with someone. Send me a PM if you are interested in discussing.

Suzanne

Maria

Welcome to OCF. Hyperbaric oxygen treatments will help prevent osteoradionecrosis. Its usually 20 before dental work and 10 after. Its the easiest tx Ive gone thru, just time consuming as its about 2 hours per day in the tank. Best of luck with your treatments.

Hi Maria

I was diagnosed with Osteoradionecrosis (ORN) in 2007. Extensive surgery was performed in April 2008 to reconstruct my mandible (lower jaw) using bone from my hip.

Have you any indication yet of how much of your jaw they need to reconstruct and where they are taking the bone from ??

Radiotherapy had also damaged my tongue flap, so therefore that also had to be reconstructed again using tissue from my hip area. I have had over 1/2 of my tongue removed. As we know everyones situation is different but my surgery took about 14 hours to do.

I met with 3 different Maxillofacial surgeons prior to my operation. It was important to me that I was informed with all the details of any possible complications that could occur. In my experience some surgeons are not good at communicating all the details. Nerve damage around my lip could have been a possibility with me, causing one side of my lip to drop, but thankfully it was avoided.

I have some small metal plates that are screwed in around my reconstructed jaw. There were 3 plates inserted by the maxillofacial surgeon and plastic surgeon during the surgery, but one had to be removed in October last year.

Before the surgery to reconstruct my jaw I had 30 Hyperbaric oxygen treatments which is pretty standard procedure before that kind of surgery.

I hope this helps a little.

Karen

HI Suzanne,
Yes I have my original oral surgeon that took my original biopsy, but I think I am going to need extensive jaw reconstruction and would really like to go to a dental oncologist. Dr Huryn, who I have seen in the past is in NY city at Sloan Kettering, is who I think I will let do the surgery, after HBO. I live in northern NJ, Sussex County by the ski resorts. Do you know it? WHo did your surgery? I only had 1 resection and they graphed my thigh. Did you have radiation? I would have come out of this with flying colors if I did not have the effects of radiation.
When are you gettting married???
Maria

Karen,
Thank you for your reply, I am scared and ticked off that my dental work is not going to last. I had extensive work done last year and an exhaustive year fighting for my medical to pick up the dental expense. But now one crown is loose because of the jaw deteriorating. I go Monday for my first consult to see the extent of damage. I have been clean for ten years and I am young like yourself. WHat does your jaw look like? Can people tell you have had extensive surgery?? What was your recovery period after the surgery?
Maria

Maria

I know only too well how nerve-racking your situation would be making you feel. My jaw was split during my first surgery to access my tongue and do the flap and then stuck back together with some plates - apparently my jaw bone had not healed properly before the radiotherapy started and well the rest is history....

I am still a work in progress, besides having a couple more setbacks everything takes alot of time to heal and therefore going from one step to the next certainly does test my patience.

My jaw looks fine - as I'm still in the process of getting my mouth prepared for bottom teeth implants my mouth/jaw looks like someone who has taken out their bottom dentures, it just looks a little shrivelled up - but once the teeth are implanted it will fill out again.

Understandably, my jaw area felt really strange at first - but over time I'm getting accustomed to it.

I guess I would be in deep $#!T if I didn't get used to it!!!!

The bilateral neck dissection was done in exactly the same place as they did during the first operation so things have healed really well on the outside. Obviously, due to the radiotherapy the tissue is still really damaged on the inside.

Recovery for me is still a very slow process as I'm still in treatment, actually I'm due to get my tongue flap debulked (thinned at the front) in a couple of weeks. Then after that heals my visits to the prosthdontist will start for the teeth implants.

Having said that, you probably don't have all the issues with the tongue flap and a couple of other setbacks that I have had, so therefore I hope your recovery would probably move at a much quicker speed.

I hope everything goes well at your appointment with the maxillofacial appointement. Keep us posted

Take care

Karen

Thanks for the info Karen. What are the benefits of getting implants as opposed to dentures. I would think the implants are risky. The plates they put in are your jaw? What was the prep and recovery time for them? Did you have to just have one side or bilateral? I think I will only need one side done since the radiation was all on my right side. Do you have difficulty eating?
Maria

Maria

The reason that I had to have another bilateral neck disection was that nearly all of my mandible (bottom) jaw had to be reconstructed. ORN had nearly killed all of the circulation in my bottom jaw bone. The plates were put in place to connect the new bone to the back remaining bits of my own jaw and hold the new jaw in place to ensure the bone knitted.

There is still one on either side at the back under my jaw and the one in the centre at the front was removed last October. The one at the front caused me a few problems and had to be removed. As the new bone was in good shape there was no drama in taking that out.

So obviously it totally depends on how much of the bone is damaged as to how much will have to be replaced and reconstructed, but please bear in mind that my case is definitely not a "text book case" as my surgeon keeps telling me!!! Some people have all the luck....... HHmmmm.....

The reason that I will be getting implants is because dentures won't be suitable to my situation. My maxillofacial surgeon will be helping me with the implants - I haven't actually gone into all the details yet but I sure am looking forward to getting to that point.

Regarding your question with eating. I have major issues with eating and they all are caused by the tongue flap that I have and the removal of so much of my tongue.

None of my eating problems are caused by my jaw reconstruction.

Alot of people aren't aware and therefore don't understand that when so much tongue is removed and tongue flaps are built or constructed, the flap is actually stuck down like the floor of our mouth so therefore we are unable to lift it and mobility is totally dependant upon how much has been sewn down and how much of our own tongue we have to control the added on bit, along with various other important issues regarding the way the tongue has been cut and nerves etc. So tongue flap mobility for me is very limited.

Once my tongue flap has been "debulked" and eventually teeth implants are completed I'm hopeful that things will be alot different and eating will be improved considerably.

Best wishes with your appointments

Karen

Maria,

I had my jaw replaced, I did have ORN however most of the damage done to my jaw was due to the cancer. I didn't have HBO treatments before my surgery, which now I find odd but I suspect they didn't due to having to remove that area of the jaw anyway from the damage the tumor caused. I don't believe that the surgeons gave me a good idea of what to expect after the surgery myself, even though I had a wonderful surgeon (Dr. Neil Futran, UW).

My case is a bit different as my primary tumor was huge and they had to remove a lot of tissue on my right side. The surgery compromised my right facial nerve causing paralysis and my lip to droop. I do have much more jaw movement now though, as before the surgery I couldn't really open my mouth and now I can eat albeit with much difficulty.

The surgery has left me disfigured and paralysed but again that was due to the size of my primary tumor and there wasn't much else to do. Others I have seen that had the same surgery, from the same surgeon came out great and have had little side effects. My side effects all stem from facial paralysis, and I would definetly get the skinny on whether that is a danger for you as it is incredibly debilitating.

Hope I didn't scare you, the others I've seen that have had this surgery turned out extremely successful. I wish you all the luck.