I Am Now Part Robot! Scoliosis Fusion Surgery a Bionic Success

Story, photos by Cassie Hepler

Well, it is now almost 2 months since I was sliced and diced at Jefferson Hospital on Feb. 12, 2016 around 9 a.m. Three days before surgery, I was told by my employer to use up my vacation days and then go on unemployment. So much for that plan of being supported and having nothing to worry about but recovery. But this is the rhythm of my life. My life has never been easy and deep down, I had a feeling it was too good to be true. Too late to file for any disability claim, I just focused on the task at hand: mentally and physically preparing myself for what I will call going through slight hell and back but worth the pain in the end. I’m not one to sugarcoat things and if you are considering this surgery for yourself or a loved one, you must know that it will be emotionally draining, physically a struggle and mentally a beating for 6 weeks to 2 months. But for me, my quality of life was going quickly downhill. There was no alternative. Some people get braced young and are fine the rest of their lives. Some get braced and still curve later in life. Some never progress beyond a certain degree. It is a gamble and the medical community claims it is in your DNA as part of your genes according to my beloved Scoliosis group on Facebook. You can get tested for it and so can your children. Please join and ask the group to learn more.

I will take you through the journey and if you’re squeamish, do not read on. It’s some pretty gruesome medical stuff at points. There are no graphic videos or anything, just some staples being removed is as bad as it gets.

Before surgery, I had to get allergy tested for metals (and for the fun of more poking and prodding, the regular allergy testing). My scoliosis spine surgeon, Dr. Joshua Heller, wanted to make sure I was not allergic to chromium which is 10 times stronger than titanium and going to be my rods. So the allergist taped on about 30-50 metal tabs on my back and told me not to get them wet for 3 days.  It was as uncomfortable as it looks and itched, especially under sweaters. Fortunately I am not allergic to any of those metals. And fortunately, I no longer have those lovely back rolls either.

After my pre-op appointment, I was swabbed for MRSA, had a urine sample taken, breathing levels checked and was told I was unable to take some of my vitamins such as Fish Oil, supplements and no Motrin or blood thinning drugs which would impede my healing.

The night before surgery, my mother and my boyfriend stayed over and of course I couldn’t sleep. So I watched that Norman Bates movie with my mom and then tried to get some sleep. I would say I got maybe 3 hours max. We all loaded in the car and flew downtown at 4 a.m. for our 5 a.m. checkin. Once they actually checked us in, things started moving faster. The day before, my father and stepmother, mother and boyfriend had lunch and they were there for my send-off as well. My best friend made it in the nick of time too.

As soon as I checked in for surgery, they shipped me and one family member back and since it was me, mom and my boyfriend at that point, mom was beside me. We waited, they took my stats, quadruple checked my name and surgery, we wiped myself down with alcohol wipes head to toe and I was given a gown, granny panties and yellow socks with slip guards on them. That was the time to document my back before.

Soon I was settled in a bed and ready to roll. I kind of half hugged and baseball shook and held everyone’s hands as I rolled away, calmer than I thought I would be. Nurses even asked if I was on medication I was that chill. I think I was just exhausted. Off we went for even more X-rays which we ended up not doing as I had gotten them done a week before, after fighting with my insurance on why a scoliosis patient needs full neck to hipbone scoliosis X-rays. So far, I know they do them at Jefferson and Bryn Mawr Hospital in Philadelphia.

Then I was back waiting and finally off to anaesthesia and the pre-surgery area separated by blue curtains. They quadruple checked my stats and name yet again. Dr. Heller popped by and we discussed the surgery again. I asked him what he ate for breakfast and he said a bagel and coffee, I said good and that I hope they break for lunch. He mentioned he would have time to eat after they were finished putting spacers in between my vertebrae from the front. He also mentioned perhaps finishing the rest Monday. My eyes must have burst out of my head as if to say oh please no because he then assured me, he will likely finish that day and it would take about 12 hours total.

Soon after, they started putting needles in my hands for the anesthesia to go in. First they numb it, then inject the huge needle which serves as a plug for whatever drug they want to give you. Everyone was very kind, nice and I even joked around at points. They had to stab me a couple of times to get the right vein in both hands but that’s normal for me for blood taking too. I have thin skin and hiding veins I suppose. The last thing I remember was, “We’re going to give you something to relax you.” And I was out.

When I woke up, I was in the exact same spot expect my first thought was, “I’m crooked.” It was as if my body was rejecting this correction in my mind but I was determined. I then wanted to move my legs and asked if I could they said yes, please do. I had them all over the place! I would drift off for a second and then a female nurse would say, “Breathe, Cassie. Breathe.” And I would stir and take a breath in. It took weeks before I could take a full breath in as my lungs were becoming compromised and now I had full access to my lungs which needed to heal.

I kept asking when I would get to see my family, once every hour. They kept me in ICU for about 2 or 2 and a half hours and I was finally allowed to see everyone. It was late. I think it was a 13 hour surgery and my mom didn’t even leave the hospital until she knew I was OK. Everyone was amazed I was as with it as I was for going through such an intense surgery but most of the rest of it is foggy. I just felt love, got hugs and told my mom to go home and get some rest after we hooked me up to a morphine drip finally after being in pain and constantly bugging a nurse to inject something into my IV.

Random nurses and assistant doctors would come through and introduce themselves to me and ask questions, none of which I remember in my morphine haze. Dr. Heller popped by at some point to update me. And much like his face in this pic, it was also a blur. So I took some photos as I do naturally to remember.

My first room I had a roommate and could barely remember her name. Our curtain divided us however our curiosity and sheer boredom soon got us talking about our doctors and surgeries. She also had back surgery and was on a morphine drip and blue plastic breathing device. I hope her healing is going as well as mine.

At one point, Dr. Heller was not happy with the X-rays and we paused everything to wait for the word of more surgery. More X-rays were taken so he could see if my body was adjusting to the surgery properly. In his words, “I did a limited fusion for you, by not including the L4-5 disk. If you were way off coronally post-op, we could have gone back to give you a little more curve (to bring your head back over mid pelvis). Thankfully you are able to correct on your own and thus I think we made the right choice by hopefully giving you many years of flexibility through two healthy discs (L4-5 and L5-S1).” And I felt just as thankful for not having to go through it again.

Soon I was moved in my own room with a view that few Philadelphians ever see. I slept most of the time, enjoyed groggily looking at the beautiful architecture and remember my family and boyfriend visiting, bringing flowers and a teddy bear. At this point my healing was going as planned and normal, according to the doctor.

A couple people from my workplace came by to say hello and see how I was doing. One brought by these delicious chocolates I’ve never tasted before which were quickly devoured.

The hospital staff deemed I was not healed enough to tackle the spiral Manayunk staircase I had at home so they offered me a booklet of rehab options to choose from. I wanted Bryn Mawr Hospital however my Blue Cross insurance would not cover it (that’s a whole other blog post about the bullshit that is the archaic American health care system I learned so well this year). So I went with closest distance to Manayunk (it makes my mom nervous to drive in the city) and of course with good ratings and chose Cathedral Village in Andorra, right across from Kohl’s. It was Presbyterian (I’m spiritual, not religious but find kindness is kindness) and it technically was an old folks home however it had a gorgeous church, greenhouse and Japanese sand garden. So I showed my mom how to use Google Maps, put in the address and we parted ways as they said I needed to take an ambulance and was not ready for car action quite yet. Even freshly doped up beyond belief, that was a rough ride. It felt like we hit every single pothole, then again in Philly that’s not hard to do.

When I arrived, they showed me to my room and just kind of left me there. I was totally confused, thinking there should have been some sort of orientation like a tour or something. As soon as I lay down, I passed out in the remote controlled mini bed for a while (I barely fit with my feet touching the bottom of the headboard) and when I woke, I hobbled down the hall holding the railing until a nice handsome nurse gave me a granny walker complete with seat in dark blue. In the elderly world, it is a pretty sweet ride or so I hear.

Of course I was the youngest person they’ve ever had there. It smelled of death and urine except for my room which was full of flowers eventually and I kept it cool and let the fresh air clear the space. My mom eventually made it after getting lost with my rolling luggage and goodies and I was so happy to see her. And right after she arrived, a good friend/my future realtor showed up with delicious salmon for me to enjoy. Unfortunately, it “got lost” in the fridge and we never tasted a bit of it but her perfectly timed arrival was a pleasant surprise.

That night however was a living hell. They did not have my medication on hand and as my mother put it, “I looked like a lion trying to escape it’s own skin.” As one point, she begged the nurses to take me back to the hospital in tears. Finally, a doctor appeared and gave me what would be my medication from them on: Valium with Oxycodone and 350 mg Tylenol in between. I was allowed to take Oxys for breakthrough pain as well which was needed sometimes. As mentioned before, the bed was small and very uncomfortable as it was plastic and felt like I was sleeping on nails (or in my case, screws, which I was) so my mother went and bought a foam mattress cover at Kohl’s which made my stay at the old folks home much more comfortable. I told the tale to one of my nurses later on and he said that happens to everyone who comes in. Shame on that place for making people twice my age suffer needlessly. But I was stuck there for another week or so and we made the best of it.

The next day, a delivery of the most fragrant arrangement of flowers arrived from my friends at City of Hope.

 

As more friends visited, even more flowers arrived from my best friend, then edible arrangements from my bestie’s sister (my adopted older sister) and an old school State College friend from my PSU days.

I was completely blown away by the amount of love everyone was sending me through flowers, visits and then just when I thought it couldn’t get any better, my brother, his wife, my niece and her best friend came to visit for the weekend with me and my mom. It was so nice to hug them (the best I could) and spend time together. We took my granny walker and my granny looking self outside and did some exploring however the greenhouse was closed on weekends but just the fresh air was nice. The rest was kind of a blur but I felt that love.

And one of my model friends from when I first started delving in brought me gifts, flowers and most importantly her support. She is also a nurse (and singer) and made sure to check my wounds herself.

Days at the Cathedral Village consisted of eating on a timely schedule. Breakfast was around 9 a.m., I never joined the cafeteria because sitting on wooden chairs was painful at that point so I would just eat in my room with a tray over my bed. Lunch was at noon sharp and dinner around 5 or 6 p.m. where you had a choice of three options. One night, I had to let my mom order and she ordered egg salad sandwich which she loves and I hate and I’m pretty sure she had food poisoning that night. I think that was the only night she didn’t visit me.  A mother’s love is truly healing and as she said, “You’re my baby, I’m not leaving your side.” Even though her baby is almost 8 inches taller than her now.

Soon physical therapy started however I would walk the long length of the hallway and back with my granny cart just to get some exercise. I soon learned there were oreos and goldfish crackers in the kitchen near the piano room so  I would go, fill my robe’s pockets and walk back and repeat. It was junk food motivation! Everything else I always ordered healthy to help my body heal and drank Ginger Ale to settle my stomach. They were there for us as snacks so I loaded up and had to wean off my oreo addiction when I got home. I now have a Whole Foods version which of course are not as delicious in trans fat so that helps.

Anyway, PT consisted of taking an elevator to the third floor and walking down a long hallway to a room even though there was one closer to me, I suppose they figured that walking was part of it. I had an escort each day however once I beat him to it, which the staff found amusing. They had to make sure I could get up and down those Manayunk stairs so that was part of it – stepping up and down on a tiny wooden stair set. I would do leg kicks and 3 pound weights and they would call it a day. I still to this day wish I would have been at Bryn Mawr, everyone said it was the best PT in Philly.

On the following Friday, a lady from the office came and told me around 5 p.m. that my insurance was not covering any more of my stay and of course the people to call to discuss this decision with were “closed” by the time I spoke with a human. One of the nurses was as disgusted as me. So I was kicked out the next day and told to take my time, which I did. I ate breakfast, got my every 2 days shower (and stood the last time), ate lunch and was finally released into the wild with my mom. We were on our own. I had pre-filled the car with pillows as instructed by the scoliosis group and mom loaded up the car, I awkwardly got inside with her help with the seat laying back and soon we were home. My roomie greeted me with a card and candles and I know I was a zombie looking creature at that point. I could tell by the look in her eyes. Mom said I needed to rest and let me tell you, as soon as I was in my bed with help from my bar assist, I melted into my marshmallow topper and passed out for hours. There really is no place like home.

Adjusting to life at home was difficult but with advice from the scoliosis guidebook from my Facebook group, I was well equipped with a seat for the shower, a toilet lift with bars, a hand grabber and a bed bar to help me “log roll” as they call it out of bed. I had prepped everything to be higher so I wouldn’t have to bend in my room and put a dry erase board on the wall for reminders, ideas and more (I actually had a dream to do so a while back and it has been very helpful because these narcotics make you dumb, slow and moody). The valium seems to make me worse but I’m sure the Oxys aren’t helping either. And for a writer and editor not remembering words, it’s very frustrating. I’m sure the surgery caused its own trauma, markedly no menstruation yet which I don’t miss but do plan on having children sometime. However, obviously not anytime soon. I would have to wait until my surgery anniversary date of next year to even start trying to allow my bones to graft as he used bones from my hip for my back, another reason to be taking mad vitamins, which a nutritionist suggested with a power healing program and eating as healthy as possible.

After I got some much needed uninterrupted sleep in my own bed, I felt like a new (yet still high) woman. I would wake up, grab a snack off my nightstand, take my meds and carefully go to the kitchen and make my own breakfast as I had prearranged my pans to be high up, no bending required as since I don’t cook much so it was doable. Mom would make her goulash and I would gobble it down and froze me some for later microwave meals.

Before we knew it, it had been 2 weeks and time for an appointment in Bryn Mawr to get my staples out. Dr. Heller’s assistant, Lisa, who I had grown fond of as well, was the mechanic on hand and she pulled them out with precision.

About once or twice a week, my mom and I would take trips to places where I could take the granny walker, walkabout and get some much needed exercise. Some days our ailing bodies (she has bad knees and is up next to be a robot) would conflict but we always found ways to move around. The cold weather wasn’t helping much so we would plan outings for sunshine days. We went to the Valley Green Inn which she quickly fell in love with and fed the ducks and of course, met others who knew of someone who had scoliosis and/or surgery. This is so common it makes you wonder exactly why they haven’t eradicated the mutant gene yet? Because viagra is more important I suppose!

My mom also decided to go ahead and give her grandkitty Carmella the lion cut I talked to her about. It was an awesome gift because that means less cleaning for me and Carmella had taken such a liking to her grandma that when she went home for a weekend to central Pa. to visit her boyfriend, she attempted to pee on her pants when she came home! Or maybe it was because of the lion cut, we’ll never know. But regardless, we kept ourselves entertained especially when Carmella decided to bring a garden snake in the living room as an offering of love to my mom.

Time flies by when you’re high all the time and all of the sudden it was my 6 week appointment with Dr. Heller. I rolled in with my blue granny cart and was happy to see him and the friendly nurses at the Bryn Mawr office. And he was pleased too as my body was now straightening itself out even more since surgery as expected. Your body literally needs to adjust to its new self and leaning the other way.

Eventually it was time for my mother to go home and us both to get on with our lives so I began brainstorming the idea for this blog post and have been using my long monkey toes that I always disliked as my hands or to pick things up as well. I also realized how much doing yoga up until the Sunday before surgery helped my body’s flexibility still to this day. Those pesky Manayunk house steps have now become my exercise steps and when Spring decides to actually arrive, I ordered laceless sneakers since I can’t get to my Nike laces yet to get out and about and able to walk around the neighborhood. So even though someone once called my toes, “claw toes” they sure came in handy (and it is genetic as well, we call it the Hepler toes). It’s also a sign of royalty apparently. How do you do? *Curtsey*

Relying on friends and my boyfriend is rough since they all work weekly day jobs but they have been very supportive. And even some old photography friends came out of the woodwork to offer their hands of help. My walking exercises has gone downhill a hit however since I can’t drive on narcotics and because Mother Nature is bringing winter back for some reason. My best friend did drag me out on a crispy, cool and sunny Spring day for a walk on the Manayunk Towpath this time without my granny walker. Granted, I had to take breaks but kept on moving. Because that’s what you have to do in life.

So in the meantime, I’ve been trying to slowly take back over control of my online babies, Explore-Philly.com and Explore-NJ.com so I can get things going again by the beginning of May. My days are spent bundled up and online mostly with some sort of exercise thrown in, fighting with my insurance to get full scoliosis X-rays, fighting with unemployment and losing muscle weight I’m assuming because of being too tired to cook so I keep it simple and light. That and if you don’t move much, you really don’t need to eat more. Imagine that! I also think the meds make me less hungry in general. I mean, there’s a reason junkies are so skinny!

Reaching out to one of my old school Manayunk friends, I made it to the almost 2 month appointment April 6, just shy of one week. Fortunately he likes girls in scrubs so I know who will take me to any other appointments if anything popped up! Getting sick of the drugs making me dumb, slow and moody, I was anxious to begin weening off of them and talk to the doctor on how to do so. So off we went to Bryn Mawr Hospital for X-rays where I met yet another woman who’s 24 year old daughter has scoliosis and had the surgery as a child but is now looking at another one as she has continued to curve. There really is no rhyme or reason, but I was glad to help her and directed her to Dr. Heller and the Facebook group. Soon, Dr. Heller will be the scoliosis doctor! I really appreciated the way Bryn Mawr covered my lady bits from getting even more radiation because I will certainly be glowing by the end of 2016 aka the year I have named “Hospital.”

When I walked in, I was warmly greeted by the staff as usual and Anita exclaimed look at you, here by yourself with no walker already and walking around! And I realized she was right, it was the first time I did not need someone to lean on and felt confident doing it alone. All my other appointments before surgery, I brought my best friend.

Dr. Heller was running behind and fortunately my friend was patiently working in the car outside so he was a bit rushed but I only had a short list of questions this time for him. When I first went in to consider surgery, I literally had pages of questions of information as a true journalist should. He seemed amused, but would try to answer as many as time allowed and then I would hit him with more the next time and so on. I  told him I would be putting this in my blog and have a decent following. His ears perked up and he gave me his email to send him my posts so hello there Dr. Heller from the flip side of the hospital. He asked if I felt I was ready to go to physical therapy and I told him I already booked an appointment Saturday at NoveCare in Bala Cynwyd. Dr. Heller said he’s sure I will be their physical therapy poster child in no time. He checked my scars and said the dots will go away soon, poked at the Krueger slash and asked if it hurt and nope. The only real lingering issue is the stiffness of my right side because of the anterior incision. I am not supposed to twist my body so that may affect some modeling shoots later this year but if the photographers don’t understand, it’s their loss. And at one point, I had Dr. Heller feel my waist and say the side with the scar is so hard and the other is just a little less hard. He kind of laughed in delight and asked if that was a bad thing? I realized then I was just so used to not having a waist anymore and may be able to get some abs back again! So now to taper off the narcotics so I can (legally) drive, get my body moving again and get back to work in journalism, modeling and acting.

So off to physical therapy I went with help from my sister-in-law and niece coming to fatten me up for the weekend. And lucky me, they have a physical therapist that only works Saturdays (the only time most of my friends are available) and used to work for back surgeons. In my head, I would be on the bike, elliptical, etc. but realistically he is starting me off in the most important place – my core. Although he said walking is the best form of exercise for anyone so I will continue to do that and up and down the steps. My doctor said no twisting and my PT guy, Chip, said no bending for now too until we get my core strong again.

Did I mention I am now 5 foot 7 and 3/8 inches? I wrote it down as I’m surprised myself. I’m curious as I continue to straighten, if I will ever end up my intended height. Only time will tell!

So my next appointment will be in 6 more weeks and by then I should be weened off the narcotics, able to drive myself and almost back to life. It will take a full year for my new body to adjust and see where I may be nerve numb for life. But my new normal has to be better than sleeping all the time! I’ll trade pain for numbness any day.

Keep an eye out for photographer Mark Harris and I to collaborate later this month with photos we did of my back right before surgery and my new back, scars and all. Maybe now it’s time for a tattoo?