Extensive Oral/Bone Surgery

The surgery I need so desperately has nothing to do with vanity (my pretty days are behind me). It has everything to do with staying alive. The medication that destroyed my teeth (Actiq) did much more than just disfigure me; it caused an infection that spread into the bone. Although all three of my doctors have warned me about this, one of them sat me down and said, “Listen to me, this infection will spread, and if it spreads into your bloodstream or neurological system, it will NOT be survivable for you.” That got my attention. Our conversation was last year, and the infection is spreading.

The total cost will depend upon: (a) How far the infection has spread, and where; (b) How much bone has been destroyed; (c) If any grafts will be required; (d) If the infection has compromised any part of the sinus; and (e) How many procedures this will end up taking. The longer I wait, the most dangerous it becomes.

Although I’ve been dealing with chronic pain as a result of my neurological disease for a long time now, the pain from this infection is difficult to live with. Trying to medicate intense, acute pain along with chronic pain is a logistical nightmare – and largely ineffective. When pain levels get high enough, nothing makes sense and everything is a huge deal; small tasks that should take an hour end up taking three hours instead, and they are a miserable three hours.

How did it happen?  We discovered that a medication I’d been prescribed for breakthrough pain, Actiq Lozenges, had systematically destroyed my teeth. It was in “lollipop” form, designed to be placed under the tongue or against the cheek, so it penetrated those tissues. We had no idea that the Actiq was going right through my gums to destroy my teeth - they looked fine from the outside before they abruptly started disintegrating. Because I brushed my teeth religiously and didn’t go to sleep at night with Actiq in my mouth, the damage didn’t happen to me as rapidly as other Actiq patients. As I prepared to contact the drug’s maker, the FDA abruptly ruled that only cancer patients could receive Actiq. This was after multiple Actiq patients had filed suit. I couldn’t afford to sue the drug’s maker even if I wanted to.

I consulted my oral surgeon 10 months ago; he did X-rays and worked out the series of procedures in which he could address these issues (He’s treated Actiq patients before.) I’ve been trying to find a way to pay for it ever since. My insurance company flatly refused to cover it, even though it’s the direct result of a medication I took for my neurological disease.

My insurance company subsequently notified us in May that they had cancelled my health coverage and decided to make their cancellation RETROACTIVE to January 1, 2013. So now we’re receiving overdue medical bills from all last year that were never paid.

Instead of being bitter, I’m trying to find a way to get the surgery I need, so I can see my daughter live happily ever. I’m not afraid to die, but I want to live – I've been involved in animal rescue for years, and a lot of animals, along with my two-year-old Rottweiler (who thinks all kitties belong to her) depend on me. 

Even though my illness prevents me from working outside of the home, I volunteer as an Independent Advocate for the Elderly. I make phone calls, write letters, or just listen when they need to vent. (The people I help are lovely and they understand when I have days that I can’t think straight, or when my pain levels are so high that I can’t function.) I worry about what will happen to them.

I try to help someone every day, and that philosophy has allowed me maintain a happy heart throughout my life. If you can help me get the surgery I need, I will continue to savor every day of life, and to pay the goodness forward for as many people as possible. If you can’t help me, please help someone who needs your assistance.

Thanks for reading about my situation. I hope you’ll never experience this first-hand, and that everyone in your family will be healthy and happy.
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Organizer

Sami Swan Thompson 
Organizer
Dallas, TX
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