Wednesday, March 18, 2015

Mixed Decision; Mixed Feelings

The other day I received a lengthy letter in the mail from my insurance provider with the ID "Mixed Decision."  It began:
We have determined the following is medically necessary and eligible for benefits:
22558 -- Arthodesis, anterior interbody technique, including minimal discectomy to prepare interspace (other than for decompression); lumbar
22585 -- Athrodesis,  anterior interbody technique, including minimal discectomy to prepare interspace (other than for decompression); each additional interspace 
22851 -- Application of intervertebral biomechanical device(s) (e.g., synthetic cage(s), methylmethacrylate) to vertebral defect or interspace. 
But then, in the middle of the page was this:
Services NOT Eligible for Benefits 
20931 -- Allograft, structural, for spine surgery only
The clinical reason for our determination is:  Your doctor has asked to do surgery on the spine in your lower back.  You have had back and leg pain.  We asked your doctor for information about your back problem and the surgery.  We have reviewed that information.  We have also reviewed your health plans medical policy for spine surgery.  That policy says the material your doctor has asked to use to help the bones heal together is not proven to be equal to or better than other products available for your condition.  Therefore, the use of this material is not covered.  The rest of your lower back surgery is covered.  
Translation:  The ALIF fusion was approved, BUT they probably want me to use an autograph (i.e., a piece of my hip bone) as the spacer for my L5-S1 fusion versus using lab-created or cadaver bone.

If you read my blog entry, "Refuge but no relief," you know that this isn't an easy decision.  The minute they slice me open, my back will never be as strong as it once was.  Our bodies are amazing machines and science has yet to replicate the intricate beauty and strength of that machine.

There's also a chance of failed back surgery (i.e., the surgery isn't successful in relieving pain/other symptoms) OR that the fusion at L5-S1 creates problems for other discs (especially L3-L4, L4-L5 that are already bulging), as is common with fusions.

My gut says "wait as long as you can and try to get the hybrid surgery."

Why is this?  The L5-S1 fusion is going to happen no matter what; it's just a question of when.

The fusion will most likely put added pressure on the L3-L4 and L4-L5 discs, accelerating their degeneration/bulging/herniation.  If the Globus Triumph (the technology my doctor wants to use) isn't FDA approved by the time that happens, I'll most likely be looking at more fusions (decrease in range of motion/mobility).  Even if the Globus Triumph is FDA approved by then, (1) I may not be a good candidate (because of the progression of the degeneration) and could be disqualified immediately; (2) my insurance may not approve the use of the device because it is too new to them, thus disqualifying me financially (this isn't something I can pay for out-of-pocket).

Like I said, it's a matter of when.  The pain is restricting my life in new, fun, and unimaginable ways. My ODI Score has increased (from a 46 to a 52) mainly because I am unable to sit for periods longer than 20-30 minutes without pain (when sitting or when trying to stand up), I have trouble walking (and am ordering a cane for myself), transit is unbearable (car/taxi, bus, subway) for many reasons, and I'm having trouble cleaning my apartment (need to hire a maid).  Again, ODI doesn't account for many parts of my life where I'm restricted.

Basically, I prioritize my errands/chores for good days, but on all other days you can find me in bed. I'm in too much pain and too exhausted to do much else, and even if I do other things, I end up paying for it.

In all ways, this is not the life that I want to be living.  I want better for myself and right now I'm not sure what that is.

Monday, March 9, 2015

Good day, Bad Day, Calculated Risk Day

For the past month or two, my back has not been cooperating.  Because of this, I pretty much have stuck to home/work and errands with the occasional drink at a non-crowded bar with very protective friends

But yesterday was a GORGEOUS day after all this snow and I was feeling the cabin fever.  I texted a friend for brunch and after we took an Ingress constitutional,winding up at the Washington Monument. All told, more walking than I've done in a while. 

I took a bunch of pictures and posted them on Facebook.  Someone replied the the photos and said "I hope this means you were out and about in today's nice weather and feeling better!" 

Yes. The weather was PHENOMENAL.  As for feeling better.... I don't really know how to address that.  People often see me have a good day and think that I'm magically cured. Or worse, they see me on a good day and think I'm exaggerating the bad days, or that a bad day isn't lurking in the shadows.

Ask anyone with a chronic disease, injury, or pain, that there are good days (where you have the energy to do things and a body that's on board), bad days (where you have no energy and/or a body that is not with the program), and days that are in-between.  

There are days and events where one must make a calculated risk:  we may not have the energy, we may not be feeling well, or we'll know we'll pay for it after, but there's something that's worth the expenditure or after-effects. For example, I'm going to a 2Cellos show in April.  I know that sitting for that long will not be fun, but I'm real excited for the show. 

Saturday, February 28, 2015

Lean on me when you're not strong

I am a proud person and don't like people seeing me weak or vulnerable. Sometimes I have no choice.

Last night the plan was to get dinner with my friends Neighbor John (so as not to confuse him and my brother John) and Amanda (who I have known since college and who has been so sweet and supportive with the whole back thing) at a local grocery store that also has a little dining area. After, I wanted to stop by the bar where my friend Kevin was DJing cause it has been a long minute since I have seen him.

Midway through my grilled cheese I knew I was in trouble. I had shifted in my chair and felt that familiar, searing pain. I whispered to Amanda that something was wrong. Eventually, it got to the point that anytime I moved you could see it on my face.  I try to keep the panic and pain hidden.

The employees of the store called last call and I knew I was in trouble but had a few minutes before they were gonna kick us out. I asked Neighbor John if he could walk me home.

We waited until most of the other patrons to leave before I tried standing up. Immediately my legs started shaking as red hot pain moved through my back. My friend (inculding one of Neighbor John's friends) huddled around me wanting to help. They offered to get me a cab but I knew the motion of the cab would be too painful. They asked if I needed to go to the hospital, but the ER would have just given me pain meds and sent me on my way, as they tried to do last time.

Tears began to roll down my face; part pain, part embarrassment. Neighbor John said that he didn't realize that my back pain was this bad. Another patron (who I think was a doctor) asked if i needed help.  Amanda asked the staff if they had an ice pack.  Bless her she remembered.

With the ice pack I was able to take a little edge off the pain, enough to get to my feet. Amanda, John's friend, and John all helped me shuffle out of there. What would have normally been about a 10-minute walk to get home took much longer. But thanks to my friends I got home.

I am still in excruciating pain (fuck you Percocet... you have one job...) and unable to move well. I can't sit, i can shuffle a few steps before I need something to support me. I am even wearing my corset to help limit movement and provide a little support. Also, corsets are great for securing ice packs.

Today is my brother's 35th birthday. Instead of being able to celebrate with him, instead of being able to enjoy the sunlight, I am in bed trying not to move. But that gives me time to be thankful for everyone in my life who sees my pain and knows that I am fighting to stay afloat.

Friday, February 20, 2015

Attitude of Gratitude

I've recently become fascinated with the UK television show Embarrassing Bodies.  I've been following Dr. Christian Jessen) on Twitter for some time (he's adorable, candid, and always has good info).  I don't plug my TV in/don't have cable, but I don't think anything like this exists in the United States.  People in the UK talk about their medical problems on national TV.  Not only do they talk about them, but they quite often get naked and have exams.
following one of the show's doctors (

But I like their take -- that despite the show's title, our bodies are nothing to be embarrassed about, that we owe it to ourselves to get to know our bodies, and to have honest and frank conversations with our medical providers.

Anyways, I was watching an episode last night and they had a feature on a woman who has had arthritis since she was a child.  She's had both hips replaced and both knees replaced.  She uses a wheelchair to get around most of the time, but she's not confined to it. She said something that stuck out to me -- "Arthritis has added something to my life."

For so many people with chronic illnesses,injuries or pain, the illness/injury/pain is about what it has subtracted from his or her life.  We think about the things we can't do or have missed out on, we think about how we feel like our bodies have betrayed us and sold us short.

But man... what a novel concept that chronic illnesses/injuries/pain can actually add to our lives.  I know that my spine injuries have helped me cultivate more compassion for others as well as for myself, and more gratitude for my good days (and even a few of my bad). It has also helped me chill out a bit.

Her statement also reminded me to stop being so adversarial with my back injury. My refuge and relief will come from honoring the gift my injury has given me -- the ability to listen to my body, honor my pain, and returning to trusting my body.

Tuesday, February 17, 2015

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 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...

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.

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.