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.