Saturday, December 8, 2012

Tie the Knot Twice. Or Thrice.

Sorry, friends, about my rather cryptic and emotional post from last night.
I was lying in bed, Eli had already gone to NeverNeverLand after the exhausting day we suffered, and I was feeling utterly conflicted--deeply furious, and so sad I felt empty, and also had a bit of confusion as to what road to take next thrown in there.  Not a happy time.
And I needed to write it out, and in the absence of a pen and paper (or anything I could have possibly written on, I'm not fussy), I grabbed the phone off my nightstand and started typing away.

Let me give you some backstory.
There is the waaaaaaay back backstory that I could write a novel about (and am honestly trying to), but I won't take it that far.
For those of you that personally know me, and those out there that have read a few of my blogs, you're aware that I've been struggling with my health for years.
Since 2010, to be precise. 
For others, or those that can't keep up with my problems (because you all know I've had a whole stack of health concerns, here's a summary, because I'm an English nerd like that.  Just be glad I didn't call it a synopsis.  If you know the story, skip ahead).

Summary: because of my childhood cancer, my left mandable (jaw bone running from my ear to my chin) was removed and they put the smaller of the 2 bones from my leg in there instead.  But since I was just a kid of 8, that bone is tiny. And has remained so. We tried to bulk it up a decade ago with a bone marrow graft, but it failed.
In 2010, for fear of me losing my teeth on the bottom, we started looking into new options.
When they operated on me to cut out the cancer, they took out my teeth on the bottom left side of my mouth and I haven't had any there ever since.  So my teeth on the bottom begin in the center, and there isn't anything anchoring them in (no molars for instance), so my gum line is receding and eventually they'll start to fall out like dominoes. 
Several doctors recommended getting implants so I could have false teeth there to prevent this.

My insurance, and some research, delivered us to "the best specialist in Utah."
FACT: He is not the best.  Nor even near it.  He is an incompetent asshole.
Unfortunately, we didn't know that at the time.  So we went with him.
In 2010 he did a bone marrow transplant from my hip into the jaw, then placed 2 screws within that bone to secure it.
Then he put 2 metal implants deep into the bone, took a skin graft from the roof of my mouth, and sewed that over the top so it would help re-form gum tissue and heal me all up.
I can't even begin to describe the pain involved in this procedure, particularly the bone marrow removal.  I was on a cane from that for months, and a liquid diet for 6 weeks.
The next step was adding the top posts that poke out of the gumline--what the fake teeth screw into.
They cut into my gums to get down to the implants in the bone, and put the posts on top.
And I started to feel sick.

I felt like I hadn't recovered fully from surgery--just very sore and tired all the time, and getting a bunch of sinus infections (which I never had before).  We dismissed it as part of the healing process.
I got worse.
My symptoms were all over the board, and kept multiplying.
I was nauseous all the time, to the point of dry heaving.
I started getting severe migraines for the first time in my life.
Along with vertigo and dizziness, confusion and difficulty concentrating, constant stomach upset, vision changes, mood changes, unexplained frequent aches all over my body, skin eruptions (especially along my jawline), extreme fatigue, depression, insomnia, and weight fluctuations.
To name a few.  I was sick all of the time with head colds and sinus infections. Sometimes I got unexplained fevers.  The chronic fatigue was the worst.
I was tested for anemia, Lupus, parasites, HIV, et cetera.  I was put on anti-depressants. I changed my diet.  Nothing helped.

I confronted the doctor, said I hadn't been well since he placed the implants.
He said I was a hypochondriac and dismissed my symptoms, literally laughing them off at times.
My family and I persisted (they obviously saw my illness and were so worried) and asked him if I could be allergic to the implant, knowing I've always had a bad nickel allergy.
He said that my implants are pure titanium and it is impossible to be allergic to them (NEWS FLASH: titanium is always an alloy!).
I saw dozens of doctors and they were all baffled by my myriad of fluctuating and newly emerging symptoms.

And then I got a severe infection in my mouth and the tissue puffed up around those posts like a mother, and it was gross.  It was oozing and bloody and painful and I followed the surgeon's orders and kept swishing with nasty prescriptions and taking a boatload of antibiotics.
He kept saying "I've never seen anything like this before! I'm not quite sure what to do."
He decided to cut the infection out.
And do 3 more doses of heavy antibiotics (goodbye, flora in my stomach).
It didn't go away.  He cut on me again (keep in mind these were full on surgical proceedings, where they'd put me under and dig out the rotten flesh aggressively).
He performed 4 such surgeries and although I asked him for other options and to discuss the problem with another doctor, he ignored me.

So I sought a second opinion myself, that confirmed what I feared: one of my implants was infected, and once an implant is infected, there is no possible way to save it.  It must come out and trying to cut the infection out or kill it with antibiotics was futile and I was going through hell for nothing, except some extra surgical experience for my terrible doctor, that seemed to think me having surgery every month or so was NO BIG DEAL.

I went back to my main surgeon to have him remove the infected implant.
This surgery was highly dangerous because once the implants are ossea-integrated they're part of the bone and removing them you risk shattering the jaw or nerve damage.
Thank God, it went alright. This was in early June of this year, 7 months ago.
And the infection immediately went away and the pain from the inside of my mouth decreased noticeably.

But it didn't go away, nor did all of my symptoms.  They decreased significantly, and yet didn't cease.  The surgeon said the infection had probably been making me tired and I would get better (after he put me on MORE antibiotics).  I didn't.
I got more tired.
I tried everything, including natural remedies.  I stopped working, as Eli and I agreed I needed to dedicate my time to getting better and helping treat my newly discovered PTSD (which was exacerbated by my frequent hospital visits, health problems, and surgeries).

I still wondered about the possibility of allergy and dove into research.
I asked the surgeon about it again, pressed him for information, and demanded he provide a chemical breakdown of the implant components.
He provided it and it supposedly didn't contain nickel. I was stymied, but only briefly.  I wanted to find out what other metals I could be allergic to, so I sought an allergist to get tested.
This was a nightmare that I won't go into--but I will say it took me 3 weeks of calling the insurance and tons of doctors, having to file a case, and having it go before a review board, before I was able to see a dermatologist, who demanded a co-pay for all 4 visits for the testing.  Awful.
The test showed that a metal in my implant is a metal I am allergic to.

I asked the dermatologist to consult with my surgeon and wanted more information from them so I could make an informed decision as to whether or not the remove the remaining implant.
They didn't get back to me for 3 weeks or so.
My father and I went to visit the surgeon to discuss my options and he still acted blase about the whole thing and would not admit he had done anything wrong, denying the allergy and the fact that he ignored my repeated requests for answers (yes, I know he can't do that because he would be liable, but he never even said "I'm sorry you haven't felt well.  Probably because he thought I was lying about the whole thing).
He said he would get more information, as titanium alloy allergies are so rare that they still don't know the symptoms an allergy to it can present.

I didn't hear from him for 2 months.

Back to the present!!
This week, after I started my new job, I realized that the everyday pain in my jaw was worse.
It got deeper, like the bone itself was throbbing.
And finally, yesterday, it was agonizing.  It scared me.  So I called the idiot surgeon and he wouldn't even get on the phone with me.  The receptionist told me that he had consulted with the dermatologist more than a week and a half ago and they had decided the implant is dangerous to my health and I need to get it removed ASAP.
And no one called me to tell me.
What. the. hell.
I was livid, and upset, and scared.  I gave her a piece of my mind and demanded to speak to him but she wouldn't let me.  She said they could schedule me for surgery on the upcoming Tuesday, but I responded "I'M NOT HAVING SURGERY WITHOUT TALKING TO HIM FIRST! I WANT TO KNOW WHAT THE HELL IS GOING ON AND WHY NO ONE IS TELLING ME ANYTHING!" and she said if I just wanted to TALK to him, they could see me at the end of January.
What. the. hell.

The conversation ended with her saying I would hear from them within an hour.  I didn't, and the calls I made throughout the day went unanswered.  These people are not professionals--are you getting that impression?

And near the end of the day yesterday, the skin around the implant in my mouth started to swell.  overnight it has turned into a blistering, oozing, disgusting ball.  It is infected, just like the first implant was.  This is a major symptom of metal allergy and implant rejection.
And this infection has moved soooo much faster than the first one.  It is freaking me out, and more than anything the pain is unbearable.
I called the Answering Service at the surgeon's today to see if they would prescribe anything for the pain to get me through until I can properly talk to him and get emergency surgery scheduled and the bimbo on the phone refused to put me through to talk to him and treated me as though I were demonstrating crazy-addicted-drug-seeking-behavior.
Lemme tell you,
ibuprofen doesn't even make a dent in this kind of pain.  This is the kind of pain that makes you dry heave and considering going to the Emergency Room for some kind of relief.  This is the kind of pain that makes weaker, more alone people kill themselves.  It is not to be taken lightly, nor dismissed.

I am also incredibly upset, obviously.  I despise this man, yet he placed the implants and removed the last one without problem, so I know I need to have him remove this one as well, for safety.
If only I could do a "Walter White" to my surgeon's practice.
He is my best option.  But I don't trust him and it is mighty shitty to be put to sleep with someone you hate with every fiber of your body, that has basically ruined the last 2 years of your life, looming over you with a scalpel.

 Maybe I watch too much Grey's Anatomy and expect superior doctors. 
Bur regardless, this guy is neglectful, incompetent, and a bit sociopathic.

I regret ever having any procedures done. I thought I was helping myself and it only ended up being hurt.  Lots of it. What was the point?  Unnecessary pain and suffering?  Yes, pain is weakness leaving your body and what doesn't kill you makes you stronger, and all that motivational crap.  But for what??? It shouldn't be voluntary and not even have a light at the end of the looooooong and twisted tunnel.  I feel like I am the butt end of a cruel, long-term joke.

I feel guilty for casing so much worry to my husband, family, and friends.  I am unspeakably livid that 2 years of my life has been taken away.
I've lived life as best as I can, yes, but not the way life should be lived.
 Not putting on a facade and acting happy and lively, but really feeling inside like I could collapse at any second.
And that is the worst thing to do to a person--to take away their time.
And then accuse them of lying about feeling ill.

We are looking into filing some sort of medical malpractice lawsuit.
We should be compensated for all the money we spent seeing other doctors, desperate for some kind of diagnosis and help.
But most of all, I want to do everything in my power to prevent this psychopath from doing this to anyone else.  It is unfair, traumatic, and shattering.  He should not be practicing this kind of medicine.
I had a breakdown last night, and sobbed to Eli "this just isn't fair.  I though I'd paid my dues with the cancer years ago."
I had to keep reminding myself, "If God brings you to it, He will bring you through it,"
and opening my Great Great Aunt's locket and reading the note I put into one of the windows:

When you get to the end of your rope,
tie a knot,
and hold on.

I've tied it tight baby.  Several times before. And I'm tying it again tonight.  And holding on as hard as I can.  Luckily, I've got people behind me, supporting my grip.

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