Friday, September 14, 2012

The 2% (or "Not the 13 Month Update I Wanted to Give)

I confess...this is not what I hoped to share (both here and on a Back Pain forum).  Once upon a time, I made myself a promise.  I knew that the tendency is to only go online about negative results....whether it is bad service at dinner, a purchase that never worked as promised, or a failed surgical experience.  SO I was going to be different.  My surgery WOULD work....every indication was very positive....and I WOULD come back and talk about it.  Because people do NEED to see the good stories and know that there's a selection bias in posting towards the bad tales.  When surgery works, people go live their lives.  When it doesn't, they stay in posting land.

But, alas, I don't have that story to tell...

For readers who stumble on this and don't know the tale (I'm linking both for anyone reading this to learn about these issues and for my own reference)...I had an L5/S1 anterior lumbar fusion w/ BMP and titanium cages on 8/8/11.  I'd tried epidurals and PT and other such thing with no result.  The discogram (nasty test) confirmed the suspected level was an issue.  And so did the surgery....the doc said it as one of the worst discs he'd seen in years and he does fusions like dentists fill cavities (okay...maybe more like root canals).  I trusted this verdict even more b/c Dr Dad is a partner in the practice so I got pretty clear statements all along (and went out of town for it).

I had good indicators for success.  I'm 34 now, 33 at operation.  I'm not overweight.  At the time of surgery, I had solid muscle tone so even more "good weight" than average.  I do not smoke and I cannot use anti-inflammatories for other reasons....two factors that greatly increase the risk of a failed fusion.

According to Surgeon (neurosurgeon w/ heavy emphasis on low back, kinda a "Fusion King" regionally), most people progress well for 6m, have a blip that plateaus or slides a bit, but then take off in the right direction.  I did okay for the first 6m...indications said I was fusing (incl x-rays...kinda lost on how that changed) and I worked hard in PT.  I was let go from PT to keep working myself and weaned off the last meds (I have a VERY high painkiller tolerance but a LOT of withdrawal trouble).  And then it went downhill....and kept going.  By late Feb, I was spending close to 23h/day in bed and I haven't reversed that trend.  Worked with Pain Docs, one jerk, one nice, with no help.  Recently some bigger side-issues from med switches and just running down too much plus sleep troubles (a couple months waking up at most REM cycles).  Started a new physiatrist who did suggest trying my post-op brace a few hours a day....which did help.  Paused further ideas while dealing with the new side issues...

Back to Surgeon this week....13m post-op.  Saw the pic myself and it was all too clear.  I saw the cages.  And only the cages.  Not a single bit of bone.  Surgeon said that only about 2% have no growth at all with BMP (and that it was on-label use...BF saw ads about off-label suits for the cages/BMP but not relevant to me).  None of the factors that increase the risk of being in the 2% apply.  As I said to Surgeon, I don't want to be special here.

So....well, a bit of a backpedal first....I had insurance through the Ex.  He got remarried.  It was cancelled WITHOUT fact, when I called, I'd been uninsured for two weeks and they hadn't sent anything.  That IS being fixed...I'll have to do at least two months on crazy COBRA rates.  But it is slow to get it back in the system...sent the paperwork back (that they only sent AFTER i called) but not processed yet so a bit o Pause.

The plan --- Surgeon's hospital (about 3h from my home, again went far to go to trusted practice...and helped limit bills too) offers a new procedure mixing bone scan and CT that can be more definitive (though really pretty clear I didn't fuse at all).  Surgeon wants to do the test then prob plan surgery2, posterior w/ more solid hardware, screws, graft (may be marrow or bone itself).  I'm not feeling right with this doc but my inclination is to do the test and then go elsewhere for a 2nd opinion....will also be out of town b/c there are limited options here (could stay w/ family for some of treatment).  I am 95% on the 2d operation train....I cannot live like this for 50 more years.

So....yeah....not the update I planned, but the one I got.  Freakin' 2% total lack of growth.

Positives (trying!!) -- There IS a reason I never dip below a 6 and often hit an 8 or 9 on the pain scale.  The pain IS totally vindicated and VERY real.  There ARE things to look at (after a long haul being told that I was FINE and KNOWING I wasn't....that's the only place I get really pissed at the docs).  I am developing a PLAN and have some HOPE.

Still, I need a bit of wallow time....


Lee said...

It's okay to wallow. Sometimes getting the words out helps. Hang in there, Cheryl!

Annabelle said...

Man, I'm so sorry. I hope you can get the info you need and that surgery two actually fixes things.