My Scoliosis Journey (27 yrs and counting)...

"WHY BLOG" you may ask?  I hope reading about my journey with scoliosis will help you understand a little more about it and how it affects the person who has it.  I'm doing this in part as a therapeutic outlet, to process the road I've traveled thus far as well as the road that lies before me, which includes 2 more surgeries unfortunately and a lengthy recovery.  I am also hoping that reading about my experiences may help others who experienced or are experiencing similar things with respect to scoliosis - past, present and future.  I have been told by all 5 surgeons that although spinal fusion surgery has become rather "routine" over the past 5-10 years, the extent to which I will need surgery is not very common.  Not all patients who had their scoliosis corrected with Harrington rods 10, 20 or 30 years ago will develop the problems I've developed: "flatback deformity," DDD, spinal stenosis, multilevel facet arthritis, vertebral slippage and nerve compression - but for those of you who do, the options are limited.  And as in my case, the only option lies before me.  And I will face those 2 surgeries head-on, like it or not because I have two little kids, a loving husband and an entire lifetime ahead of me.  So off we go!

"PAST" - So my story starts: I was 12 yrs old and in 7th grade. The school nurse noticed a hump on my back as i bent forward in our yearly 'scoliosis screening.'  A note was sent home to my parents and with that we went to visit an orthopedic surgeon.  I/we were told by this particular doctor that it would get better and that my parent's "shouldn't worry about it." But as the years passed and my activity level increased (I was a competitive soccer play from the age of 5 up until my junior year of college), so did my pain.  Nothing helped.  We went to see an amazing doctor in Philadelphia, Dr. Balderston, who took one look at my xrays and said that not only were my curves severe and impacting my breathing and moving my internal organs around, but my scoliosis was rotating and pushing my ribs out of alignment as well.  So, that's when i was told i needed surgery to correct my scoliosis.  In '93, i had harrington rods (which back then were state of the art) placed on either side of my spine to correct my scoliosis.  Two years later, i needed a revision surgery to place the rods lower in my spine and provide more support to my lumbar area.  It was an extremely painful recovery - the worst part about having to go thru the 2nd surgery is that i had the memories of recovery from the 1st surgery to look back on.  And that just sucked...because it hurt.  ALOT! But i made it through with flying colors, despite problems with anesthesia and morphine hallucinations in the hospital after each one.  Having two major back surgeries in two years is not really on the list of "high priorities" for a then 20 and 22 yr old college student!  But, like i said, i made it through and was relatively pain-free up until about the year 2000.  That's when i noticed more aches, more pain in my lower back, just more discomfort overall.

      AFTER                          BEFORE

1993

In 2003, I met a wonderful guy from Canada (Chad) who loved me, curves and all (and not the sexy kind! Haha!) - He didn't care about the 17" scar running top to bottom and the two 6" scars running across each hip from where they took bone grafts for each surgery years before.  But he didn't care. He loved me for me and that's all that mattered.  They were/are my "battle wounds" against this crappy curvy twisty condition that makes clothes shopping a nightmare and makes every day tasks more difficult and more painful.   We married in April 2005 and by February 2007 our son Matthew was born.  Two years later in May 2009, our daughter Kate was born.  I didn't have an epidural for obvious reasons (there's no epidural space due to the bone fusion running the length of my spine) - so they were born "au naturale."  After Matthew was born, my back would "go out" more frequently and i'd have these bouts of severe and intense back-stabbing 'episodes' - sometimes they lasted a few days, sometimes a month.  Once Kate was born though, I could definitely feel my body (my spine actually) changing.  Like it was giving out more and more; like it was collapsing in on itself.  It was gradual but it was something i definitely noticed and i felt like a little old lady in a 30-something body.

"PRESENT" - So here we are in the new year - 2012 - The kids are beautiful, healthy, active little explorers!  Matthew, who will be 5 next month and Katie who will be 3 in May, keep me and Chad on our toes!  I don't sit for very long - but what mother of 2 young kids does, right?!?!  The difficulty is that NOW, it's much more painful for me to get up, move around, and do everyday ordinary things: like laundry, food shopping, making the beds, getting the kids ready for the day and out of the house in order to be at work by 8am.  It's harder to just DO anything.  Then there's dinner and playtime and stories and baths.  Again, nothing any other Mom or Dad doesn't do every single day.  But the difference for me is that all of these things hurt, to varying degrees, every single day. 

In June 2011, I was unable to move, literally, without excruciating (and i don't use that term lightly) pain. I couldn't get off the toilet, i couldn't get up from sitting or even make slight adjustments or shift my weight while sitting without immense and intense stabbing pain.  I couldn't lift Kate into her crib and coudn't get down on the floor to change her diaper.  I couldn't do a damn thing!  After an almost a week of this, where i was rendered completely incapacitated by sharp, shooting stabbing low back pains, Chad took me to the ER and I was admitted...it was THAT DAY that i realized "something" is wrong.  And man alive, was i right! 

After coming home from the hospital for a few nights stay, i began the journey of getting some opinions on what the hell was going on inside my spine??  I started with my original surgeon, but after atleast a dozen phone calls, was always pushed off by people telling me, "He doesn't see scoliosis patients anymore."  Problem was, i wasn't a scoliosis patient at this point.  I was a patient with severe degenerative disc disease, lumbar stenosis, vertebrae slipping forward on top of one another, severe nerve and disc pain from pinched nerves and something called "Flatback Syndrome."  At this point, scoliosis was secondary.  After getting over the initial shock that i really wasn't going to be able to see him, i started with Cooper Hospital and Dr. Clements.  I thought worst case scenario when i went to see him in July, i might need a disc replacement.  I wish that's all i needed!  No, not even close.  When he took out his black wax pencil and started drawing all over my xrays to illustrate what he thought needed to be done, i honestly couldn't breathe.  I felt all of the blood drain from my face and i felt my throat closing up, like i was being choked.  I left there thinking this guy is an absolute NUT - he has no idea what he's talking about!  When i got the written consult in the mail the following week, i sobbed...literally sobbed because although i thought he was crazy after what he proposed, something deep inside me said that he was right.  I knew it then even though i didn't want to accept it.  His words were repeated 4 times over as i saw a total of FIVE orthopedic spine and scoliosis specialists - from PA, NJ and NYC.  And they all said the same thing.  And it wasn't going to be pretty.  All FIVE ortho's said (and i quote): "this is huge...these surgeries are huge, complex, risky and extremely difficult/painful."  I even had one tell me i should "get my affairs in order beforehand" - no surprise i didn't choose him.

"FUTURE" - 10 days and counting....Ok, so now the details.  After 6 months of seeing specialists up and down the east coast, i decided to schedule the surgery.  After much prayer, many tears and alot of self-doubt, i ultimately decided on the very first doc who i initially said was a "NUT" - well, after hearing the same story from 4 other doctors, he was nothing like i had originally thought.  In fact, he was absolutely right...hitting the nail on the head with the least amount of information.  Clements had some fuzzy sub-par xrays and a blurry MRI - the other 4 docs had a full scoliosis series set of xrays as well as a CT scan.  I had many follow up's with Dr. Clements, bringing my husband to the 2nd visit, my Dad to the 3rd and even my aunt to the 4th.  He explained over and over again, with the patience of a saint, what was needed and how it would be done.  And now, i will try to summarize what he said i will need (in just 10 days....) -

• 2 surgeries (1 hospitalization) one week apart: i have "flatback syndrome", spinal stenosis, severe degenerative disc disease, anterolythesis and nerve impingment
• 1/24/2012:  1st surgery will be an ALIF (anterior lumbar interbody fusion) where a vascular surgeon very carefully dissects muscles and vessels moving them, as well as several main arteries running parallel to the spine, out of harms way so that Dr. Clements (the ortho surgeon) can: (1) remove L4-L5, L5-S1 discs replacing them with metal cage spacers and bone morphogenic protein which will eventually fuse and give the vertebra the appropriate space needed - (2) he will remove bone spurs and decompress any pinched nerves he sees from that viewpoint.

**The little thin black lines are where he will will place the new rods and pedicle screws after having removed my old hardware and hooks**

**Standing front view xray showing uneven hip height, harrington rods and hooks (which will be removed) and again the thin black lines show where the new hardware and screws will be placed**

• One week passes - i'm still in the hospital - only out of bed to sit in a chair next to the bed
• 1/31/2012:  2nd surgery, flip me over: (1) remove all hardware (harrington rods) and hooks, (2) perform laminectomies to correct something called flatback, a condition which pitches me forward so that it's impossible for me to stand up straight (i have a 25* hip flexion contracture), fuse with metal rods (NOT harrington rods) and pedicle screws from L1-S1 - finally, he will further (3) place rods into each side of my pelvis (called "pelvic fixation" - picture opposing hockey sticks)

Illustration of Flatback Deformity:

LEFT: normal curve of spine

RIGHT: Flatback in lumbar/low back and pitching forward of upper (thoracic) spine

My Flatback xray

• Another week passes - still not home - but i will be able to get out of bed by the 2nd or 3rd day post op.  Depending on how i progress, i may (or may not) need a week or 2 at an inpatient rehab hospital before coming home to my husband and 2 children. 
• I will be in a back brace for 3 months, will not be allowed to lift anything heavier than a book for the first month and within 6-12 months will hopefully be able to return to work (I'm an OT working in rehab!) on a part-time basis.  Going thru my first surgery in 1993 actually prompted me to get my degree in Occupational Therapy b/c it was the OT who taught me how to do things differently, while still maximizing my independence in doing them by using all their cool "gadgets" - the sock aide, reacher, long-handled shoehorn and so on.  I thought to myself when i was all healed up and back at school, "I want to do that" - so i did :)

My parents will be living with us for a little while until i'm able to do things on my own and with less pain and more mobility. Chad will be taking intermittent time off to be with me and help with the kids and general household management stuff.  It will be stressful on all of us - but i really do have to have this done.  That trip to Cooper's ER last week erased any doubt in my mind as to whether or not i really needed to get it done. I am really looking forward to living with alot less pain and i can't wait for all of this to just be a distant memory!