I'm a thirteen year Squamous Cell Tongue cancer survivor. In 1997 I had free flap surgery, radical neck dissection, peg tube, chemo (5FU/Cisplatin) and then of course, 36 days of RAD. I was stage IV at diagnoses and while I pretty much sailed through surgery, treatment kicked my butt. I remember some pretty dark days during that time and for a fairly long while after treatment was completed. However, I did survive and life was really good. I was 42 at the time of diagnoses.

Then a few years ago I began having swallowing issues, trouble chewing my food, and over all increased pain in my oral cavity, episodes when I had bleeding with an unknown source or anyway I couldn't determine where the blood was coming from, and a discharge with odor. I thought my cancer had returned.

Long story short, the culprit this time wasn't cancer but rather Osteoradionecrosis or ORN and what a night mare this has been. After two surgeries, 40 dives in HBO, the area will not heal and I have a fairly good chance total mandible replacement surgery. The oral surgeon now says 50/50 chance I will loose my jaw. So far I've been misdiagnosed, two surgeries, and when the Oral Surgeon wanted to go back in to do a third surgery it was then I said, "NO" and began to look for another doctor and a second opinion. UGH! The new doc says the previous doc treated me too aggressively and therein lies some of my problem. Currently I'm on an antibiotic and antibiotic mouthwash and in a holding pattern waiting to see if I will indeed heal more naturally. I feel comfortable with my new doctor and am more of a natural healing type of person anyway, plus, ORN is what my new doctor primairly deals with so he has a pretty solid knowledge base and a great reputation. I didn't see this guy the first time because I followed the referral my ENT gave me. My dentist misdiagnosed the problem completely but that is a whole other story.

Is anyone out there currently dealing with ORN or has anyone previously dealt with it? I'm really nervous because this has been going on since Dec of last year, with no end in sight. UGH! I've lost my bottom teeth and now have trouble with my speech and eating since the second surgery numbed the right side of my face and bottom lip. I look horrible and ORN is very painful. Very painful. I lost over 2/3 of my tongue and I use every bit of that tiny bit of tongue I do have to speak, eat, chew and swallow my food. I feel like I'm starting all over again in terms of speech --- and eating. I'm back to wearing a bib for crying out loud. I was 42 when Dx'ed with my cancer and even though it was a difficult surgery and treatment regime I was able to focus and do what I had to do to move forward. This time around I'm almost 55 and things just aren't so easy anymore. I feel frustrated, out of control, and just plain sad and discouraged. I'm disgusted with Doctors who don't know what they're doing but go ahead and do it anyway -- and I'm afraid I'm going to loose my jaw.

Anybody out there have any advice? Thanking you in advance.

Donnamae

Donnamae

I have sent you a Private Message.

Karen

Hi Donna,

Oh my gosh this sounds like quite an ordeal. I am so sorry that after all these years of survivorship you are having to deal with this! So unfair. It does sound very painful. Anything with the mouth and teeth is extra sensitive. So many nerve endings. I hope you've gotten some good medications to help with the pain. Youa re very brave dealing with all of this.
I know there are a few others that have gone through what you are dealing with.

Thanks so much for your sweet PM! You made me feel really good. You are a sweetheart. I will write you back more tommorrow

Donna- I am really praying for you and hoping for the best possible outcome for this surgery. Could they put in a metal jaw? I've heard of that here before.. Is that a possibility?

Sending you healing thoughts and hoping your pain is being relieved.

XO Kate

I am also sure you don't look horrible!!! You are beautiful to many people. You have a beautiful spirit that is for certain. Hang in there Donna.. You are a VERY tough tough cookie.. writing more tommm. sweet dreams.

Donna,

Even though radiation is the standard of care in head and neck cancers, unfortunately there can be side effects that present years later. Infection and ORN are two of them. My husband was diagnosed and treated for ORN with surgeries to rebuild his jaw. I had posted 2 threads on this subject that you might want to read. While it has been a very challenging time since the 2 surgeries, we would not have done it differently. Prior to his surgery in Nov, his bite was out of alignment, and he had lost the ability to chew food. He also lost more teeth on the affected side but there were no opposing teeth there anyway. Those teeth had been removed in his cancer surgery on '07. The results of the jaw replacement surgery are nothing short of amazing!!! He has his jaw function back and he likes the way he looks. The key to a successful outcome is going to an OralMax, and a Plastic that have experience doing thousands of these procedures.

It has been a very tough 3 years but now that things seem to be back on track, very well worth the time and effort. Clark does have some pain from the jaw surgery that is his issue now. The Plastic is referring him to a pain specialist for that.If you want to see before and after pix, I can send them to your email address. Send me a PM.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=107143#Post107143

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=114996#Post114996

All my best--
Anita

This is a very scary thing! What kind of symptoms were you having?