Refuge, but no Relief

If you've read my " About Me " section, you know that I have a degree in English with a minor in creative writing.  When I wa...

If you've read my "About Me" section, you know that I have a degree in English with a minor in creative writing.  When I was younger, my emotions (ahem...anger, sadness, disappointment, rage) made it impossible to communicate sometimes.  Writing was my refuge, the place where I could put pen to paper (in written journals or letters) or fingers to keyboard (on my personal blog that I started in 1998), and create some objective distance from the surface emotions and really figure out what was going on.

There are still times where I turn to writing as my refuge.  The only difference now is that I'm doing it very publicly. I think that's one reason why people connect with my story, my message, and myself:  I've spent years honing my ability to sound unfiltered, raw, and self-aware.  But I do this for myself as much as I do it for any person that reads my blog.  Sometimes life can be so overwhelming that the only way I know how keep my head above water is to write. And so...

Recap:
From late-2007 to the end of 2013, my lower back behaved pretty well.  Between 2011-2012 I was more focused on fixing my neck.  As of February 2013, my lower back hasn't been faring as well.  Not only have I lost feeling in my leg twice while I was in the shower, but also my rebound time after exercising is much slower than it used to be, and I'm having more bad days than I used to (i.e., times when I can't exercise, times when I'm in pain and it's hard to do just about anything, depression because I'm in such pain).

So at the end of January, I made an appointment with my spine surgeon (who I adore, who is a smartypants).  He was hopeful that he could intervene and alleviate some pain.  He assigned some home work -- a few diagnostic tests (MRI, discogram) -- before he could make any decisions about what he could do exactly or whether he could do nothing at all.

Update:
I had spent most of the long weekend in bed -- partly because it was very cold outside (my back does not like cold), partly because I was still exhausted from the discogram, and partly because I was so on edge about my follow-up.  Oh, and probably a bit of depression too.
I tried my best to take a "come what may" attitude, but that didn't work. What I really wanted was for my doctor to walk in and say "WE CAN REBUILD YOU! I have seen all of the tests, I know your history, I have a plan that will leave you pain free and doing cartwheels down the corridors of the hospital."  (NB:  I don't know how to do cartwheels as is...)  I feared that he would say "We missed our window of opportunity.  You're too damaged."

My follow-up appointment with Dr. O'Brien was at 10:15.  The nurse let me know that I was the first of his patients to brave the elements and make the appointment. At 10:45, I started to wonder why I hadn't seen my doctor yet.  I wondered if he was filling in for the other spinal doctor there.  Maybe he had gone for a long coffee break.  Maybe he was standing in front of a mirror rehearsing what he was going to say to me.

At 10:51 he walked in and, after friendly greetings, said "Well, I've been looking through your test results and scans and I have bad news. Your discogram results indicate that you're not a good surgical candidate as there was high levels of pain at multiple levels. Any surgery could leave you worse off than you are now."

My heart sank with an audible "thud" when it hit the floor.

Just by looking at my face, eyes welling up with tears, he knew just how much I wanted him to have the same definitive and clear plan that he had for my neck. For all the joy that I had when he said I was a good surgical candidate for my neck, he knew there was an equal and opposite reaction for bad news.

Dr. O'Brien handed me the box of tissues as I squeaked out, "Did we miss our opportunity? Did we wait too long?"

He explained why I wasn't a good surgical candidate based on the discogram, and how insurance most likely wouldn't cover the surgery based on those results.

He and I had discussed the discogram results and how I felt that they didn't give accurate results. My understanding was that the test was trying to recreate the pain that I normally feel. My discogram didn't recreate the pain I feel on a normal basis:  the pain that I felt during the discogram was frighteningly new -- the lightning that I felt go down my right leg and the whole-back spasm were both new.

I was relieved when Dr. O'Brien said that it could be considered a "failed discogram" (i.e., not yielding useful information) and not so relieved when he offered to have another doctor redo the discogram (um, I'm sure the other doctor is nice, but hell no). I was also amused when he said that he used to call them "scream-o-grams" but then a bit perturbed as to why he didn't warn me. I felt like I was the odd woman out for screaming my way through it, but apparently this is a normal reaction to needles being stuck in your discs.

I asked Dr. O what he would do if he set aside the discogram and I had a few million bucks, keeping in mind the long game (i.e, what would he advise for the long-term health and flexibility of my spine?).  He said that the x-rays and MRIs both point to L5-S1 being the main culprit of my pain as that was the site with both disc and vertebral degeneration.  He advised against a disc replacement in L5-S1 (they aren't as stable as cervical replacements, they are very hard to revise--the anecdotes alone were reason enough to be cautious about any back surgery) in favor of an Anterior Lumbar Interbody Fusion ("ALIF") using an artificial spacer (i.e, not my own bone [hip], not cadaver bone [eww]). In other words, the very thing I was trying to avoid (based on failure rates/cases, restricted range of motion, and the anecdotal advice of just about everyone I knew) was now my best surgical option.  He said that the U.S. is a few years away from the multi-level devices that he would want to use in my lower back at L3-4, L4-5 (the sister device to my cervical implant, and the next generation of lumbar artificial discs [there hasn't been a major breakthrough since 2004 and 2006]).  An L5-S1 fusion could buy me some time and stabilization.

Dr. O'Brien said he'd give me some time to think about it (or rather, as he knows me kinda well by now, to research the crap out of it) and that we could circle back.  I asked him "what if we petition insurance now?" And he asked me whether I wanted to go against his advice and ask for L5-S1 artificial disc, or whether I was asking for the ALIF.  That kind of threw me cause, well, I don't have a medical degree or 20 years of orthopedic experience.  I have no business making that kind of decision.  Trusting Dr. O'Brien's opinion, and my limited knowledge of L5-S1 disc replacement issues, I begrudgingly asked him to pursue the ALIF.

The thing is this:  insurance could still say "nope, too risky, can't approve it" and then we're just back at the point where we started -- that to do any surgery would cause more damage than just staying the course with conservative (ahem ineffective) treatment.  Or they can approve the ALIF and I could chicken out, preferring to wait until the day when having surgery is a better outcome than doing nothing (i.e., for when my discs completely rupture versus slowly leaking).

I don't know what to do.
I hate not knowing what to do.
I hate not having a crystal ball.
I feel a lump in my throat every time I try to talk about it.
I remember how sad and frustrated I feel on bad days.
I feel the weight of the depression bearing down on me.
I also remember how happy I was when I wasn't restricted by this pain.

Do I just go back to that life and pretend I have no restriction, knowing that further damage makes me a better surgical candidate? Or do I just miss out on the life I want, spending my days trying to avoid the inevitable?

I just don't know the right path or if there is one.
I just don't know.

tl;dr options
(1) do nothing and wait for technology to get better
(a) live life normally
(b) remain an inactive hermit
(2) do nothing, live life normally, suffer herniation, have hand forced
(3) do ill-advised artificial disc at L5-S1
(4) try for (improbable) insurance-covered ALIF
(5) Eat ice cream and hide under the covers for a month or two.

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4 comments

  1. No one can answer this for you, I guess, but I can tell you from my own journey: When I do not act and should have, the answer becomes clearer though time and circumstance. However, being a stubborn bone-headed type, sometimes that answer has to also get louder, and louder until BAM! My hand is forced. I've done option #5. It is harder to make a good choice when you've eaten so much ice cream that your waddle, though. ((hugs)) Love and patience to you. You are NOT alone. You do not need to decide today. You can try to live normally on good days, do the ice cream on rough days, try for the ALIF approval, and scream like hell when you need to. We're here for you, Robby.

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  2. I feel very sad for you, with no good options. I hope that the better technology happens sooner rather than later.

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  3. Great Post and nice article.Thanks for sharing.

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<3 Robby