I've been waiting for weeks to see my Doctors in Calgary on April 3rd...anticipating a surgery date to deal with the bone necrosis in my skull and hopefully some positive news about my TMJ issue.
Many of you will not be familiar with these troubles. First of all, I am a near 6 year survivor of stage IV SCC of my left mandible. Surgery, rads, and recovery, until 2 years ago when I started to develop trouble with my left ear and TMJ.
The ear issue is caused by bone necrosis around the ear from rads. A bone spur has been pushed into my ear canal, rupturing my ear drum, tearing up the inside of my ear and making it hard to hear, not to mention a great deal of pain from the exposed bone ( the bone spur is live bone, being pushed into the canal by nectrotic bone)
My TMJ is destroyed and jagged, through a combination of arthritis and radiation. It too is tearing soft tissue everytime I talk or eat, so the resulting pain from these two issues is at times overwhelming...severe enough that I've had to return to the land of narcotics to manage it.
I've been battling for nearly two years to find surgeons willing to tread in unknown territory; this is a problem they have not seen before and don't really know the best approach.
I thought we were on track...one last scan. The "plan" was to remove a baseball sized area of necrotic bone, affix an appliance, rotate a vascularized flap down from my scalp to fill in all the holes, and call it good. That changed...
I saw my docs on the 3rd. The area of necrosis is MUCH larger than they anticipated...too large. If the appliance doesn't get fully absorbed and integrated along the edges, it is not surviveable; there would simply be too much skull gone, and an insecured appliance would be a ticking time bomb...one wrong move, a bump and it would fail, and likely kill me.
The jaw is also much more of a problem than initially thought. We'd been concentrating on the obvious problem with the left TMJ. It turns out that it is the better of the two; the right TMJ is over 90% fused by oesteoarthritis...it doesn't hurt as much because it doesn't hardly move!
Long story short...they cannot do the surgery...simply too much risk. the bone and tissue damage from the rads is too severe to take the chance. There is virtually nothing they can do to the jaw short of severing and removing the TMJ's completely, putting in a feeding tube and reconstructing my face for appearance only...no quarantee that the pain levels would diminish even then.
I'm afraid I lost it with one of my Doctors. After delivering all of this news, he said "at least it's not a recurrence". I tore into him saying there were other HUGE, SIGNIFICANT and DEBILITATING issues that were NOT cancer, but were far from "small potatoes inconveniences"..GOD, I am SO sick of hearing that!!
I eat pain pills daily to keep from ripping my ear off of my head with the pain. I can barely consume 50% of my daily caloric needs orally...it hurts too much. I can't hear, even with a hearing aid ( obtained because the blockage in my ear with the exposed bone has caused an 80% hearing loss), and I try not to talk any more than absolutely necessary because it hurts to do so.
The only solution; manage the pain. That's it. Manage the pain.
Trying for more opinions is another exercise in futility...I have been through more Doctors than I can count, and they either say this is beyond their skill or experience, or they simply refer me to the next Specialist on the list. I've had my charts and scans reviewed at the Mayo, and they don't have any better a solution than what this group has to offer.
I am about as low emotionally as I've been since diagnosis. I feel completely helpless, and completely unable to BE helped.
Sorry for the "downer" post. I had to make it though...you folks are the only ones who fully understand how I'm really feeling right now.

Hi D:
I can so identify with what you're going through. For the past two years, I have been battling one doctor after the other trying to get relief for problems I am having, that may, or may not even be associated with after-radiation effects (it's been 4 years since my treatments), BUT, once the doctors find out I had radiation/chemo to my head/neck areas, and they can't "SEE" something causing my problems, they all resort to the "late radiation effects," and just say "deal with it." Heck, my symptoms are sickening and I feel they are not all associated to the radiation, but try to tell a doctor that . I wish you all the luck in the world and pray you can find a solution - guess what we have to do is keep searching, and never, ever give up. I've even had doctor's "cancel" their appointments with me and that's pretty sick, isn't it? Now, I'm going to another state in hopes I can find a doctor willing to take the time to evaluate my symptoms and at least try to find a solution. I'll be thinking about you - just wanted to let you know you are not alone in your quest for a solution.
julieann

Wayne, I am so sorry to read your post! I know your story and how recently your health has become a problem. I can identify with what you are going thru on a daily basis. My situation is no where close to what you have going on but I do empathize with what you face daily. I also have alot of pain but in comparison to what you describe I feel like I am one of the lucky ones. Your pain must be off the charts. It might help you to be on the fentanyl patch with just taking extra meds for break thru pain.

With my mandibulectomy in 2009 came a whole list of after effects. The surgery failed and my body rejected the titanium jaw. I ended up having a second mandibulectomy done while I was kept asleep for 3 weeks. I am now disfigured and have several other issues. This is why I can say I understand all too well whats happening with you. The recovery took me over a year to almost bounce back from everything and that was with the help of HBO and 8 months of IV antibiotics.

I dont know what to tell you as far as what your next move could be. I would do exactly what you are by trying to find another top rated center where they may give you better odds at having a successful surgery. My heart goes out to you. I will keep you in my prayers for there to be some way to fix this. I know it doesnt change things but I am very very sorry!

(((HUGS)))

Dragan... sorry to hear all you are going through... do you mind if I print off your post and show it to my surgeon? He is the top in his field here in Toronto, and the head of surgical oncology and ENT at Princess Margaret, and Toronto General, and Toronto Western he is a pioneer in his field... maybe he has some suggestions? I am sure the ear pain is nerve related... if they can't remove the bone can they maybe deaden the nerve? Botox? Perhaps that will resolve some of your issues? And I give you permission to smack the next dr. who belittles your issues... hugs.

Cheryl,
you absolutely do have my permission to print this off. The ear pain is definetely nerve related...live bone has nerve endings, and when exposed to air, they hurt. It is exactly the same syndrome as with a "dry socket" from a tooth extraction.

Oddly enough, the only relief I've had pain-wise was through a suggestion that my cousin, who is an oral surgeon, made.

Since it is exactly the same thing as a dry socket, he suggested we try the same treatment; a sterile packing material impregnated with aspirin and clove oil. It works by deadening the nerve endings in the bone, and I saw about a 50% reduction in pain almost immediately. The problem with it is two-fold...the bone in my ear is not stable; it is constantly being pushed further into the ear canal. They have already done 7 small procedures to trim the bone shard and try to keep it manageable.

Where this packing with a tooth extraction would eventually kill the nerve endings, the bone in my ear is a "moving target" so it only numbs them. Also, I can have some pain relief, or I can hear a bit, but not both.

With the packing in, I can't wear my hearing aid. If I can't wear that, I can't hear. With it in, I can hear a bit, and the earpiece also reduces the amount of air moving over the exposed bone, and reduces the number of pain spikes I have.

I hate to complain about something like this that is minor in comparison to what people like Christine, Jim, and others have gone through...it is "small potatoes" in that context. I guess I had built up my hopes too high, and when they were completely dashed the way they were, it was a huge hit emotionally.

I will eventually come to terms with it...I really don't have many options in that regard. It's just been a difficult week.

I will also ask local contacts for ideas.