Its been a while since I posted about my ongoing saga trying to get the problem with extensive bone necrosis in the side of my head dealt with.
For those that don't recall, or didn't see some of my earlier posts, I've developed a large area of necrotic bone in the side of my head from the rads in 2006.Normally this would likely be left alone because the risks outweigh the benefits, however in this situation, it needs to be addressed.
The necrotic bone has forced shards of live bone to penetrate my middle ear, rupturing my eardrum and resulting in excrutiating pain through having live bone exposed to air in my ear canal, plus the issue of severe hearing loss since the eardrum is ruptured and the canal blocked by this bone.
The problems getting this addressed have been numerous. First, it's a new problem. There is very little documentation on similar issues in surviving cancer patients. With little/no background info, the doctors don't really know what the potential problems might be.
Secondly, the size of the necrotic area is such that they simply can't remove it and call things good. They will have to fit an appliance to replace the amount of bone that needs to be removed, since there will be a mastoidectomy, a temporal bone resection and additional bone plate that will have to come out. Also, the damage to my ear needs to be addressed; repair the eardrum, repair the fistula that's developed, correct the lesion where the bone shard has penetrated my ear canal, etc.
They will emply a vascularized flap from further up, under my scalp to complete this repair.
Through nearly two years now of tests,scans and more tests, they finally "understand" the scope of the problem, for the most part. Now the challenge is to find surgeons to do the work.
Fortunately a random re-connection with my former lead surgeon solved much of that concern. He had left active practice nearly three years ago to pursue research. On hearing about my problems, he offered to don scrubs once again, and put together a team to tackle this surgery. In a matter of two weeks, he'd pulled together a team of four surgeons willing to take on a "risky" surgery...risky in the sense that they have no idea of the long term outcome. "risky" in that failure would be career damaging. "risky" to me. Finally, "risky" to the hospital.
The facility where this will hopefully be done is a teaching hospital and a comprehensive cancer care centre. The operation is "elective" in nature, and because of the potential problems has to be approved by their surgical oversight committee.
That may be the biggest battle to date; they are reluctant to approve something this fraught with risk, and with no previous case-work to fall back on, since it puts the hospital in a potentially liabelous situation.
My lead surgeon was a member of this committee for a number of years, and he's leading the charge, so I'm keeping my fingers crossed that he can pull a rabbit out of hat.
Meanwhile I wait, trying to manage the pain. I've been seeing a pain management specialist for several months since I am increasingly concerned at the amounts of narcotic pain meds needed to keep this manageable.
The last two weeks however, a whole new angle has been thrown into the mix. I'd travelled back to our former city of residence ( another complicating factor; we now live 9 hours drive from where the surgery will be performed) to see one of the surgical team and have another, rather unpleasant test performed. It involved lying on the right side of my head for a couple of hours, where I've developed a pressure ulcer on my ear ( also under treatment for several weeks now) since sleeping on my left side is too painful. I should also add that the TMJ on my left side is completely destroyed by a combination of arthritis and radiation damage; it's also under consideration for what surgical approach may be best...but, I digress.
After two hours of lying on this pressure ulcer, my "good" ear was sore. By the next day, it was very red, swollen and painful. By the following day, I was in the local E.R., ready to tear it off my head just to ease the pain.
Three days in hospital on I.V. antibiotics, a week of oral antibiotics to finally resolve the gram negative infection that had set up in the pressure ulcer. Back to waiting...but not for long.I woke up Sunday to find the left side of my face inflamed and red. By Monday, I could barely open my eye, and my entire face was swollen. Back to the Doctor, back to the E.R., back on I.V. antibiotics, visits with one specialist, more pills.
I see another specialist today, and have another appointment at the E.R. tomorrow morning to see two more specialists, have a variety of tests done including another CT scan and have been told to plan on spending at least the weekend in hospital, quite possibly longer, on I.V. antibiotics. They are unsure of the etiology but are bringing in a dermatologist, an infectious disease specialist and an internal medicine specialist to try to figure out what is going on. I've had so many different ear and facial infections since my initial diagnosis and surgery I've lost count; unfortunately I've also become very tolerant of many antibiotics, so they are having trouble treating them.
So again...I wait. In pain, with the added bonus of my face being so badly swollen I cannot open my eye. I am very hopeful they will have some answers; I try very hard to be upbeat about the situation, but I'm losing ground rapidly on that front and getting pretty depressed by it all.