1 Down, 1 To Go....5 Days Post-Op

Well, HHEEEELLLLLLLOOOOOO everybody!!! I'm here! I made it through the first surgery with flying colors and it only took 5 hours instead of 7 which is great. I am now day 5 post-op and am feeling better each day. I spent 48+ hours in ICU from Tuesday until Thursday early evening. I have been in a small private room with the most wonderful nurses and aides on earth! I am now able to wit and wash with setup, brush my teeth, get on/off toilet and in/out of bed unassisted. I am very pleased with how I'm progressing - the stronger I am going into the second half of this surgery the better I will do post-op. Yesterday I even walked about 50 ft and did 5 small (lower height) steps with PT (up and down!) My abdominal pain is/was alot worse than I had anticipated but that too, is starting to feel a little better each day and I'm hoping it'll continue to do so. I had a PICC line put in on Friday because with all the poking and prodding and irritation that was happening (not to mention that IV's only last 4 days) it was suggested that have a PICC line put in so that I could get fluids, meds, blood draws, whatever - directly from this site. So that was fun (NOT)! I've had someone here visiting with me (either family, friends or both!) each day which is nice. Part 2 will take place on Tuesday morning as planned barring the unforeseen. This one coming up is "the big one" - I'm still really nervous about it but atleast all these great medications help keep me from stressing out too much! HAHA. Last night I woke up twice this excruciating pain in my sacrum/tailbone area which I was told is most likely muscle spasm. Ugh! THAT was pai Ive never had before so hopefully it won't be back for another round tonight. So, with that as my update, I think I'm doing fairly well. Please continue the prayers for Jan31 -- that's the BIG ONE! And totally offi topic, the nurse just came in and said that the CNA would be in soon and that i can take a shower!! Yay!! Oh it's the little things in life!!!

Tomorrow is the day....

1 more day…I have to be at Cooper Hospital at 6:30am!  Bright and early!  But by this time tomorrow, I’ll be out of surgery and recuperating quietly, comfortably and uneventfully…and at that point, it’ll be “one down, one to go!”  I am scared, anxious and eager to get this over and done with so I can move on and get back to enjoying the little things in life again.  I am confident in the skills, knowledge and expertise of my surgeon as well as the team of doctors and nurses who will be helping me along and taking care of me through this part of my journey.  We will get through this.  It won’t be easy – but we will get through it.  Fortunately, I am blessed to have an incredibly supportive and loving network of family and friends (and even some strangers!) who have been praying for me and my family for months now.  Believe me when I tell you that we feel your prayers and support and we are so thankful for it.  I will post updates on how things are going along the way.  Thank you once again for your continued love, support and prayers – they mean so much to me and my family.

“Somewhere Over The Rainbow” -  Israel Kamakawiwo'ole

http://www.youtube.com/watch?v=c9KHo9z86rA

Keep on keepin' on...

Today is a tough day – tougher than other days have been for some reason.  Im in alot more pain and i'm a whole lot more emotional.  I can literally cry at the drop of a hat.  I’m trying to stay positive (God knows i'm trying) but today it’s just harder to do for some reason.  Sometimes, we have “loose ends” with people in our lives - people we love and miss very much – people we wish we could see and talk to more often.  That’s where I am today.  I suppose anything is possible but in this situation, it’s not likely that I’ll be tying up my loose ends before Tuesday.  It’s just “one of those days” – cloudy and cold outside, exhausted physically, mentally, emotionally – I’m just so tired. 

With just 2 days left until my first surgery, the months of preparations have come to an end:  weekly blood donations (4 total), several pre-op visits with the surgeon, an afternoon of pre-admission tests at the hospital, filling out endless and repetitive disability and FML paperwork, making lists for this and that, and cleaning the house (Oh Lord, the cleaning!!) – I feel like if I stop, even for just 3 minutes, I’ll either do one of two things: (1) pass out from sheer exhaustion, or (2) get all rammed up and start feeling my heart in my throat again (not a good feeling).  So with that, I clean and organize and re-arrange and re-organize!!  Everything!!  I completely understand why I’m doing it though.  It’s because I can control some aspects of this situation (how organized or clean my house feels, for example), but what I can’t control are these surgeries and what lies ahead for me and my family.  And anyone who knows me knows I’m the poster child for a “Type A” person.  When I stop and sit – just really sit, alone with my own thoughts, that’s when the real feelings and fears creep back into my head and the tears start falling.  It is a conscious decision (and a very difficult one at times) for me to go into this with only positive thoughts, but I’m trying.  Lord knows I am trying. 

The saying "ignorance is bliss" has taken on a whole new meaning for me because it really IS.  This isn’t my first time down this road.  There are plenty of things I wish I didn’t remember about those other 2 surgeries, but unfortunately I can’t un-remember them (and yes, I know that’s not a word!)  Going into this blind would be better I think than to go into it knowing what I know and what I experienced. 

So with that, I am officially surrendering all of this to God. I give it all to Him. I have taken all that I can at this point and am now ready and willing to move forward and do this.  I'm at the point where my mind, body and spirit simply cannot hold another single thought or "what if" or fear/anxiety.  As my Mom reminded me of something she heard in church referring to giving all of your fears and burdens over to God:  "I can't - You can - You promised."  And so with that, I am reminded of the Serenity Prayer.  The abbreviated version is the one most are familiar with but here is the original version:







God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

Life is "Brutiful"....

I heard something on the radio (89.5) yesterday – it was a story about a woman who said that life was “brutiful” - - - brutal and beautiful - - - hence the term, “brutiful.”  She goes on to say that life is both brutal and beautiful and that we need to experience both and that we get through the brutal and experience the beautiful every day, week, month and year.  I loved it.  Brutiful – it’s so true!

 It’s snowed, finally!  We woke up to the beautiful scenery of a few inches of snow this morning and by the reactions of my two children, you would have thought Santa himself had just made a surprise visit overnight!  I wish we could all see life through the eyes of a child (and that includes snow).  Their eyes filled with wonderment, delight and just sheer joy at the sight of seeing how the snow blanketed the yard, trees and cars.  It was just enough snow to get them “suited up” in their big bulky snowsuits (much like that worn by the younger brother of Ralphie in “A Christmas Story!”)  They went outside with Daddy to help him clear off the cars, shovel the driveway and make snow angels…ok, well they didn’t help my husband much but they did make lots and lots of snow angels.  At one point I was standing on the porch watching when my son yelled, “Hey look Mommy!  Look at my snow angels!”  And in that instant, as I watched Matthew and Katie playing together in snow, I thought to myself, “Yes, would you just LOOK at my two beautiful little snow angels.  Thank you God for my snow angels!”

 So, today marks 3 days to go…three, as in 1-2-3.  It’s definitely hitting me now.  That is the brutal reality of it sitting right there in front of me and I can’t ignore it anymore.  It’s like when kids play hide-n-seek and yell “Ready or not, here I come!”  That’s sorta how I feel.  The orthotist dropped off my back brace this afternoon and I’ll need to bring it with me to the hospital on Tuesday.  It’s looovelyyyy (haha).  I started packing for “the trip” – not to Bermuda or Barbados…oh I wish…this trip isn’t one many would ever want to sign up for.  From what I hear, the view stinks, the food is awful and there’s no happy hour!  So how much underwear and socks do I really need when I’ll be in the hospital for 2+ weeks?  Do I bring a hairdryer?  My phone and iPad for sure – Santa got us an iPad so that Mommy could see the kids on FaceTime while in the hospital.  I love Santa for thinking of that!  And the phone has all my music, which I love so much and can’t live without!?  Definitely need to bring a few framed photos of me and the kids.  That will be the hardest part – not seeing the kids every day.  I worry how they’ll handle this – but kids are so resilient and with so many friends and family members offering their support, I know they’ll be ok.  It may take a while, but we’ll get “there.”  The other day my son was asking questions about my back surgeries and on our way home from daycare he said, “So Mommy, they’re gonna take out your bad bones and put new ones in but they just have to remember to not touch the sides, like in Operation (the game!)”  As I chuckled under my breath but at the same time wiped a tear away, I said “Yep Matt, something like that!”  Another “brutiful” moment…

And then there was HOPE…

I've been up since 2:10am with pain that just would not relent...I tossed, I turned, I fluffed pillows, I tossed some more...you know the story.  So at this point, I've been up for almost 5 hours and I've had alot of time to think.  And here's what I've been thinking about:  HOPE.  Small word, only 4 letters.  But big meaning...huge meaning...so I did some "research" and thought I'd share some with you.  With only 5 days to go, HOPE is something very near and dear to me.  It keeps me going and it keeps me from giving in.  Some days are better than others but I haven't lost it yet (hope, that is!) - Oh I've "lost it" many times (sometimes without warning), the flood gates just open up and out pour the tears.  But I haven't lost HOPE.  And here's why:


The word:  HOPE…“Hope provides us with an anchor; something to hold onto with our soul (intellect, emotions and faith). Faith needs hope to sustain it” (The Living Word Library).   Having a clear understanding of what God has promised you gives you hope, “an unfailing expectation in the ability of your God to fulfill His promise.”  Hope is something you think about and understand while faith is something you believe and confess even if you cannot understand it.  Hebrews 11:1 defines faith as: “the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see” (NIV).

 The place:  HOPE…last night, I had the honor and privilege of experiencing something so powerful and so uplifting that I couldn’t possibly keep it all to myself.  I was, for the first time in my life, “prayed over,” led by the Pastor of HOPE United Methodist Church (Jeff), and accompanied by 3 other members of the church who meet weekly to pray for prayer requests received by them.  This was by the far one of the most uplifting, encouraging and “full of hope” experiences I have ever had.  There were prayers for peace (not only for me but for my husband, children and parents as they go through this with me), prayers for strength and for successful surgeries, prayers for the doctors and nurses, just prayers for everyone involved in what lies ahead for me.  I was both grateful and humbled to have had the opportunity to experience HOPE, literally and figuratively, in such a positive, powerful uplifting and new way.  As I drove away, I noticed I was smiling – and my heart just felt lighter.  I left feeling a sense of renewal that things will be ok – that I will not walk this path alone and that with faith and hope and love, all things are possible.  “Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you” (Deuteronomy 31:6) NIV.   

As I settled into bed last night, I thanked God…I thanked Him for HOPE…literally and figuratively, the word and the place.  Last night was everything I needed and more than I expected.

Sheryl Crow:  “I Shall Believe”

www.youtube.com/watch?v=rWuxlWl1rjs

How Great Thou Art...

Well, January 24th is now only 6 days away.  I woke up with a song in my head and it is absolutely without a doubt, one of my favorite songs ever.  I remember getting this song in an email many months ago.  I cried.  And when i replayed it, I cried again.  And I downloaded it on iTunes to my phone and when I hear, I cry some more.  I just love this song and it's ability to strike the soul in the manner with which it strikes mine is just amazing.  It is "How Great Thou Art," sung by Carrie Underwood and Vince Gill at the CMA's last year I believe.  It is beautiful.  Turn on your speakers, sit back, and have a listen (even if you're not a country music lover like myself, I know you'll be touched by it).  Here it is:

Carrie Underwood and Vince Gill

http://www.youtube.com/watch?v=pLLMzr3PFgk

So with that...after listening to that song about 30 times a day (or atleast 4-5 since I started typing this), for today, I will not focus on my pain - on what hurts - on how overwhelmed and scared I'm feeling.  I will think about "How Great Thou Art" and try to remind myself that for today, God is greater than any pain I am feeling.  I have 6 days to go before things start taking a turn for the better and waking up at 3am with all the pain I feel ends.  For today, I will remind myself of my strength instead of my weaknesses; I will remind myself of my hopeful anticipations and not focus on my fears; and for today, I will remind myself of just HOW GREAT THOU ART for walking beside me, guiding me and eventually carrying me through this. 

Isaiah 41:10
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. (NIV)

Keeping the faith...

With 8 days until surgery, I came across two particular quotes late last night and early this morning that spoke volumes to me. They are from two totally different people talking about two totally different things - one from the past, one from the present - but their similarity is in how they describe or define "FAITH."  Martin Luther King once said, "Faith is taking the first step even when you don't see the whole staircase."  Well if that doesn't sum it up i don't know what does!  Life happens (and will continue to happen) just as it should: good - bad - or indifferent, according to His plan, God's plan.  Not necessarily OUR plan (or MY) plan - because God only knows i have a plan (or atleast a colored highlighter!) for just about everything in my life and signing up for these two surgeries was NOT in my plan.  But it was in His plan.  And slowly (painfully slowly) but surely, i'm getting that.  Faith really IS taking that first step, not knowing where you're going or where those stairs will lead you.



Now, I'm not exactly the most religious person in the world (but i do consider myself a very spiritual one) and although i don't follow Joel Osteen, I did come across this quote when looking for some uplifting and motivating words of wisdom.  He said in his book, Your Best Life Now: 7 Steps to Living at Your Full Potential:  “No matter how many times you get knocked down, keep getting back up. God sees your resolve. He sees your determination. And when you do everything you can do, that’s when God will step in and do what you can’t do.” And to me, THAT is what faith is all about.  Knowing that God has a plan and the He will carry me through this - He will "step in and do what i can't."  Because i can't get through this without Him.  And until recently, (and i mean very recently), i never really understood and/or believed that, sad as it is to admit.  This whole situation with needing "extensive," "complex," "huge" and "risky" surgeries as so many of my doctors have stated over and over, has been a real test of faith for me.  The more i think about it, the more i realize that i was meant to find these quotes and take something from them because they're exactly what i need at this point in time...on this day...at this moment.   In the (very few) quiet spaces of my racing, overwhelmed, crowded-with-a-million-thought's mind, I try to remind myself of this.  And it helps :) 



Cooper University Hospital

Many of you have asked if you can visit me while in the hospital...and my answer is a resounding YES.  My only words of caution would be:

Cooper University Hospital

1 Cooper Plaza

Camden, NJ 08103

(856)-342-2000

• Given it's inner-city location, travel in PAIRS and in DAYLIGHT whenever possible.  Having driven there twice, it is pretty direct and very well marked but it never hurts to travel in pairs.
• Ask to have your parking validated if possible - given my length of stay, I am trying to get the doctor/hospital to work with me on reducing (or eliminating) parking fees for my visitors.
• Check visiting hours: I will be in ICU for 24-36 hours after each surgery and then into a private room in the new wing of the hospital.  Just be sure to check visiting hours.
• If you're ok with me being semi-lucid, feel free to come on over!  I can't guarantee an enlightening conversation but it will be nice to have company regardless, that's for sure.
• Please call my home for details on my condition - there will be periodic emails sent out but if you want more specific details, just call...my husband and/or parents will be happy to update you.

Here is the hospital website for further information:  http://www.cooperhealth.org/locations/camden-one-cooper-plaza

                

Visits are an important part of your treatment. However, to make sure that you receive the rest and care you need, visitors are asked to observe the following visiting guidelines.

• All visitors should obtain visitor passes from the information desk in the main lobby. These passes are to be returned to the desk when the visitors leave the hospital.
• All visitors are expected to respect established visiting hours of each unit.
• We suggest that visitors who have a contagious disease, including a common cold, postpone visiting until they are well.
• Cooper is a smoke-free hospital. That means smoking is not permitted anywhere in our hospital buildings and offices.
• Due to space limitations, we ask that families limit the number of guests present at bedside to two at a time.

Patient Visiting Hours

General Visiting HoursWe know how important it is to you to visit someone you love who is hospitalized. Therefore, we provide extensive general visiting hours for your convenience.

• Pavilion 6/7, Kelemen South 8, North 8 (PCU/CICU), North 9, North 10 and South 10:   9am-11pm
• Post-Anesthesia Care Unit - There may be a delay from the time the surgeon speaks to family and when the patient actually arrives in the PACU. A PACU nurse will notify the family when the patient arrives in the PACU. There is limited visiting in the recovery room. Visitation of critically-ill patients’ will be evaluated according to the patient’s condition. Parents or legal guardians of patients under the age of 18 will be permitted to see the patient.

Special Visiting HoursIn the best interest of our patients, some units require the following special visiting hours:

• Critical Care, Intensive Care Unit (ICU) - 11am-12:30pm / 3-5pm / 8:30-9:30pm

• 

9 days and counting...

So it's Sunday morning, 9 days til surgery #1 and 16 days until surgery #2.  I woke up this morning to the same familiar low back pain that has awakened me almost every morning for the past year...except this morning, I "slept in" until almost 5am.  Most mornings it wakes me by around 3-3:30am and at that point i just need to get up.  The temperature outside on tv says it's 22*.  It's about time winter arrived - it IS the middle of January!  This morning my daughter and I will go to church while my son and his Daddy take a morning adventure to a friend's house to play hockey in his new finished basement! 

I need the reassurance of going to church and being reminded that I am not alone in this journey (as much as i feel that i am at times) - i don't think i've made it thru a service yet since scheduling my surgeries without tears in my eyes at some point.  It's powerful...emotional...and uplifting...to know that i have an entire community of faith believing in and praying for me during this time.  I often joke that i think i'm on every prayer list out there thanks to my family and friends.  I can feel the support and i know that with that many people lifting me up in prayer, i will get thru this and will look back on this time in my life as a distant memory.  Several months ago, my aunt, 2 cousins and 95 yr old grandmother came over for a visit.  Knowing i was feeling very overwhelmed and very scared about what was coming down the pike, they came with gifts of prayer and support.  A mass card for healing, a prayer called "The Cross" and a beautiful bracelet with the words "Expect Miracles" - I have not taken that bracelet off since the day they gave it to me (except to shower!) and i will not take it off until they wheel me in for surgery on Jan.24th - i think it's a beautiful visual reminder that God works in mysterious and miraculous ways every day and that we are all worthy of His grace and miracles.  And so i wait for mine...and "Expect Miracles."

Here are a few passages of what i've been sent over the past few months from various people.  They are a reminder to me (and hopefully to you!) that you are not alone, you are not given more than you can handle (although you might struggle with that one like i do!) and that whatever the experience you are facing, it is all is His plan (not necessarily ours, but definitely in His):

Isaiah 43:1-2

 ¹ But now, this is what the LORD says—
he who created you, Jacob,
he who formed you, Israel:
“Do not fear, for I have redeemed you;
I have summoned you by name; you are mine.
² When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.

"This experience will be a defining moment in your life and those are always unsettled and unsettling times. But as you give over fears and anxieties to the Lord and practice trusting Him – these times become less frightening and become more of an adventure of faith. Because you will be “tuned in” you will see God’s hand in your life in ways that you have never seen before." - Pastor J.

<>"Even the Lord prayed, ["Father, if possible, let this cup pass me by, but let it be Your will, and not my will."] I truly believe that when one is invited into the garden of suffering, and accepts to drink of the cup if it is God’s will, and offers their suffering for others….they make the most powerful prayer on the face of the earth.I call it the prayer of the Redemptive Sufferer….After all….isn’t that exactly what Jesus did on the Cross?" <>- Msgr. M.

Footprints

One night I had a dream-- I dreamed I was walking along the beach with the Lord and across the sky flashed scenes from my life. For each scene I noticed two sets of footprints, one belonged to me and the other to the Lord. When the last scene of my life flashed before me, I looked back at the footprints in the sand. I noticed that many times along the path of my life, there was only one set of footprints. I also noticed that it happened at the very lowest and saddest times in my life. This really bothered me and I questioned the Lord about it. "Lord, you said that once I decided to follow you, you would walk with me all the way, but I have noticed that during the most troublesome times in my life there is only one set of footprints. "I don't understand why in times when I needed you most, you should leave me." The Lord replied, "My precious, precious child, I love you and I would never, never leave you during your times of trial and suffering. "When you saw only one set of footprints, it was then that I carried you."...Mary Stevenson

Preparations...Oh the preparations!

Lists, lists and more lists...lists for the food store, lists of the weekly and daily household chores that no one ever thinks about, lists of the kids' schedules/activities and what they eat and don't eat, lists of family and friends who want to be kept updated on how i'm progressing after these surgeries, contact info for doctor/hospital/employer/HR...you name it, i most likely have a list for it!  To write down everything on paper and actually SEE it, wow!  And yes, those of you who know me well know all-too-well that i have highlighted and color-coded just about everything!  LOL!  I think the more organized i feel the less anxious i get about the idea of NOT being in control and oober-organized with stuff.  I've even started "nesting," like when i was pregnant with both kids.  Cleaning, decluttering, toss/keep/donate!  Who knew we had so many mis-matched bed linens in the hallway closet!?!?!  And all those extension cords???  Who knew we kept them in there!?!?!  I've been nesting/preparing for these surgeries over the past month or so but even more so over the past week. 

The Up's and Down's - This roller coaster has been one hell of a ride since it began last June.  And it's one ride i'm very anxious to get off of.  The UP's of having this done: (1) pain relief; God-willing it will give me the pain relief i am looking for and need; (2) i'll be able to stand up straight without being hunched over; (3) better quality of life and being able to go out more often and do more with my husband and kids; (4) more energy to do the things i want to do; (5) to be able to sleep through the night and not wake up at 3am from pain only to come downstairs and sit on my heating pad waching old re-runs.  The DOWN's of having this done: (1) fear; i'm just plain old scared - plain and simple, but i can't let fear keep me from getting this done (2) it's gonna HURT LIKE HELL and there's just no way around that - having had 2 previous spinal fusions, i know just how much it'll hurt and i'm not looking forward to that. (3) i worry about the kids and what impact all of this will have on them - but then at the same time i tell myself that their Mommy will be better off for it in the longrun having it done now as opposed to 10 yrs from now. 

The initial shock of exactly what needs to be done has worn off.  For months, i couldn't even think about let alone talk about these surgeries.  I just couldn't wrap my mind around the idea that i would need such extensive, complex, risky surgery - two none the less - and that i'd be in the hospital for 2 weeks (assuming all goes well) and then possibly need inpatient rehab somewhere before ultimately returning home.  All 5 orthopedic surgeons (yes, i saw FIVE) used the term (and i quote) "huge" when referring to the scale and type of surgeries i needed.  Fusion surgery has evolved into an almost routine and relatively safe surgery in todays day and age - in and out of the hospital in 2-3 days.  But when i asked how common "this type of surgery is" (the type i needed), all of them stated that the complexity and extensive nature of what i needed what not common - my surgeon in his 27 yr career stated he does about 5 of them per year. 

REASSURANCE: With that being said, i did receive some comfort and reassurance from my original orthopedic surgeon who did finally agree to see me for a consult earlier this week - he basically gave me his "blessing" that what i was facing is indeed the only way to fix my back problems and he added that my surgeon scheduled to do my surgery in 10 days "is one of the best - he's extremely talented and well-equipped to handle such surgeries."  And with that, he gave me a big tight hug, wished me well, apologized that i had to go thru this but gave me great peace of mind knowing he recommended and had great faith in my surgeon.  A huge weight was lifted off of my shoulders that morning...and i am looking forward to feeling better, living with alot less pain and enjoying my children and family more.

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!