Wednesday, March 6, 2013

back update...a surprise and some hope

While it's Endo Awareness Month and I want to keep up with those posts and highlight that health issue, I am overdue in sharing a back update.  Even though I know most of my visitors also read the update on Facebook, I want to ramble a bit here for anyone else who may wonder and for people who may looking for proof they are not alone.  I also think it is good to have a pretty full record of this back journey for both medical and mental reasons.

In September, a year and a month after my spinal fusion surgery, my surgeon took some x-rays.  I'd been in excruciating pain since February (six months post-op).  I'd been in PT and things felt like they were moving in the right direction when they took a very sudden turn and landed me in what I call an "all-but-bedridden" state, even with a good bit of pain meds (which I am sick of...and sick of having to justify....give me a real solution and I will be ecstatic to be free of the meds).  The x-rays showed there was no bone growth (the goal is to grow bone to fuse two vertebrae).  The doc suggested one more type of image and then a revision surgery.  I needed a 2nd opinion before committing.  It took a while but I saw a new doc, considered an expert in the field and in revision work, in late November.  He had a similar reading of the x-ray, noting it is a very rare result (original doc said only 2% fail to grow any bone with the process used).   He did say the surgery was well-done, that it was a result they couldn't really explain. 

While he leaned towards a similar revision surgery answer, he wanted a CAT scan.  There was a long insurance-related delay (frustrating at the time, oddly a good thing in the end) and I had the scan in late January.  I eventually got a note from the new doc with completely unexpected news....the bone was now there.  It took a bit to get him on the phone, but he said it appeared to have grown in between September and January.  He mostly dismissed me from his care, which does make sense since surgery wasn't looking like the right answer.  I was still, however, in as much pain as ever.

I eventually talked to my original surgeon and Dr. Dad.  They agreed that there was bone growth, although they said it was just starting (the other doc suggested it was complete).  The clearest statement given was that I'm "a late bloomer."  Apparently that 2% failure rate is at TWO years, not one.  I was definitely behind though....I looked like a patient might be expected to look at 3-4 months post-op (the films were 17 months post-op). 

My pain has NOT changed.  I tried a day without my supplemental pain meds and the pain got so bad that I can't even remember the day much at all.  I know I was back to finding TV too challenging for me to handle.  I clearly do still need the supplemental meds, even then I'm in bed the VAST majority of the still hurts in bed, but it gets horrid if I do too much.  However, the original doc has held out hope.  He thinks that I will heal, that it is just behind schedule.  He said he expects to see a huge improvement in about a six month time frame.  With the current progress, I definitely should not be looking at surgery.  Until the time passes, I just need to do what I can to manage the pain.  Keep on keepin' on in my own lingo. 

So, there IS hope.  And that is GREAT.  Six months still feels VERY long (though the calls were a couple weeks maybe 5.5 months??....okay, I know it isn't an exact miracle date and could be a bit sooner or a bit longer).  But I've made it through over a year with this insane level of pain and very little hope.  It has to be easier with a light at the end of the tunnel....


Annabelle said...

Yeesh. I'm glad that it's showing signs of going where it's supposed to, but taking that long? Super frustrating. I hope they're right and six months bring you a ton of improvement.

Lauren Starks said...

It's like Star Wars IV, "A New Hope."

Hope is good. Hate hate hate that it's been slow coming & with little answers from your team of experts.

Adina and I want to come visit when you're better -- so GET BETTER!

Lee said...

I hope that the bone continues to grow and there is a huge improvement!