My Scoliosis Story for June’s Scoliosis Awareness Month

I have put off writing this post for so long, I almost have anxiety writing it. For those of you who have started following me here at CCG, you are probably not aware of the scoliosis awareness journey I have faced over the last several years, and what a wild ride it has been. For my loyal readers who have been with me since the beginning, I am sorry it has taken me so long to write an update and thank you for the emails and messages asking me to give one. Since this is Scoliosis Awareness month, I decided to share my story over here on CCG. This is going to be a long one, guys. So buckle up! With that said, here it is. Read on…..

A Little Backstory For Scoliosis Awareness Month

I was diagnosed at the age of 8 with scoliosis. At the time, the doctor didn’t seem too concerned and so life just went on as normal. My mom owned a dance studio where I had been training in a variety of dance genres, ballet, jazz, tap etc. However, ballet was my absolute passion. Naturally talented, my parents decided it was best for me to begin training in a more rigorous fashion and I was enrolled in Contra Costa Ballet, as well as, my mother’s studio, where I trained to become a professional ballerina 6 days a week. When my Mother couldn’t drive me up in traffic to class, I took a bus by myself to get there and walked from the Bart Station down the street when I was 11 years old. It was hard work, but the love I had for dance and the drive to become the best I could, powered me through. At 12, I auditioned and was accepted to the School of American Ballet (New York City Ballet School). This was and has been one of the bigger accomplishments of my life and I still look back on my time there with the fondest of memories. While there in my 3rd year during class, I felt a weird pop and fell to the floor. I was in extreme pain and couldn’t breathe. I was brought in to their physical therapist who noticed my ribcage was twisted and my rib on my left side was protruding out my back. After classes finished, I came home and my parents took me to see an orthopedic surgeon who told us my scoliosis “S curve” had gotten so bad, I needed surgery. Confused and in denial, my parents declined surgery and opted for a back brace that I was to wear all night, but the damage had already been done. This back brace wasn’t going to help anything and honestly after crying myself to sleep alone and in pain, I stopped wearing it after 2 months. I never went in for another check up.

At this point, I was in horrible back pain every other day and decided at fifteen years old to cut back on training. I will always miss my time at SAB  and CCB and although my career as a ballerina ended, I currently own a ballet school and get to teach other young children about something I hold so dear. I grew up being told to never have surgery or let anyone touch my back and so for years I lived in denial that it would get worse and that I didn’t need to see a doctor.

With every one of my pregnancies, my back increasingly became worse and worse. I shrunk 3 inches and my rib cage now sat on my hip bones. I had absolutely no waist. A large deformed hump developed on the left side of my back. I used clothing and fashion as a way to hide and camouflage my deformities and it lead to depression and anxiety when I would look at myself in the mirror. I didn’t even want my own husband to see me naked. I was on a downward spiral. The worst part, I was in enormous pain every second of the day and could not even do the easiest of household duties without wincing and having trouble breathing. My husband, who actually works in surgery and does spine cases, urged me to go in and at least get an x-ray to see what my back was looking like. After three kids, my spine showed an 83 degree curve, I had severe arthritis throughout my entire spine and extreme kyphosis. The Doctor said I needed surgery, however, I had wanted another child. He said, “Well, hurry up with that” and so we did. I got through another pregnancy and had my youngest son Nicky who is now three.

After Nicky turned one year old, I finally broke down and told my husband that it was time. Scared shitless, we made an appointment up at Stanford and after researching numerous doctors, I set a date for surgery. Surgery was the only way I was going to be able to live a productive life and not end up in a wheel chair by the age of 40.

I remember the night before so vividly. I remember having to hug all four kids sobbing on the floor of my daughter’s room (they were pretending to have a camp out together and all slept together that night in sleeping bags). It makes me cry even almost two years later thinking about that moment. That moment and what happened afterwards changed our family forever. Little did we all know that instead of coming home after five days that I would be in the hospital for almost a month.

Surgery

My original surgery actually consisted of two back to back surgeries totaling twelve hours. First, they entered through my side and replaced two vertebrae disc spaces with something called an x-lif cage.  After that, I was turned onto my stomach where fourteen levels of my spine were fused together with 24 screws, 3 wires and 2 long titanium rods. I was then brought to the ICU. I had lost 7 liters of blood, more than my body even has in it (this is possible because I was given many units of blood and other blood products during the surgery)  and was in rough shape but my husband was told the surgery went well and they were able to correct my 83 degree curves to around 30-35 degrees. I was not able to be adjusted completely straight due to how warped my body was and the arthritis which stiffens up your bones. I also grew 3 1/2 inches taller! Which I hated! Ha ha.

I woke up and immediately noticed I could not feel or move my left leg or foot. Panicked, I began to throw up while intubated and it was a scramble to calm me down. Once I woke up again, I told Neil about my leg and then the doctors came in to let me know they injured my spinal cord during surgery. They were not sure whether I would walk again and were very sure I would not be able to dance again. How could this happen? My head was spinning. I can’t even recall everything that happened as it all became a blur. A horrible nightmarish blur that felt never ending.

The next day, physical therapy came in and tried to sit me up. I began to vomit uncontrollably and had double vision. I was told this was probably due to the pain medicine, yet later we discovered I had a dural tear in my spinal cord and was leaking fluid. My abdomen swelled up and I looked six months pregnant. I couldn’t keep any liquid down and after throwing up buckets, yes buckets, of bile, my husband demanded they figure out what was wrong. I was in so much pain I couldn’t open my eyes. It turns out that my intestines became twisted after surgery, which cut off the blood supply to a portion of my intestines.  This required emergency surgery to remove the dead intestine four days after my other surgeries (one foot long of bowel/colon was removed). My stomach now looks as though I have been gutted like a fish.

I was still constantly sick and after losing twenty pounds, I looked like skin and bones. My husband begged them for some way to get me nutrition and after 18 days of no nourishment or food, a PICC line was put in to get me some much needed calories and nutrition.

There were various other complications and tests during this hospital stay. I began having morbid hallucinations from all the drugs I was on. They were intense and didn’t go away whether my eyes were open or closed. At one point, I thought I was a zombie on the Walking Dead eating my own children and husband. Yeah…….it was that bad.  It was a huge feat for me to even comb my own hair. Honestly, I don’t even remember every scary detail, although I am sure my husband does and I will forever be thankful that I had him in my corner every step of the way. He only left the hospital one time for 3-4 hours to go shower at home and see the kids and one night my friend Kitty, who is a nurse, took his place so he could sleep.

I hadn’t seen my kids in 3 weeks and finally on Emma’s 7th birthday, they came and we had a party in the lobby with cake and punch and me in my wheel chair.

I continued to power through attempting to stand up on my own and walk a step or two with the help of two nurses and a walker. They would ask me if I needed a break and I would just say, “No, I have to get better for my kids”. I remember the look on Neil’s face as I struggled to take two steps with a walker on my own. It broke my heart. I felt so bad that I was putting him and the kids through this. At one point, I can recall Neil recording me walking four or five steps in a row. I can still see his face and hear his voice. It was almost like I was a baby walking her first steps. We have grown so close because of this journey and I learned just how much Neil loves me.

Rehab

Once I was released from the hospital, I was transported to a facility closer to home. Although I was unhappy about this, I couldn’t do anything for myself yet and needed to be in physical therapy multiple times a day to try and make my leg work and train my body how to hold itself up again. I was a beast. I made it my mission to get better so I could get out of there. My husband wasn’t allowed to spend the night there and I was super depressed. After 5 days there, I was able to walk a limited amount with a walker by myself with someone at my side.

Coming Home

What a feeling to sleep in your own bed! Oh man! Although I was home, I still needed help doing EVERYTHING. And I mean…….everything. Yeah…..if you are thinking what I am thinking, that too. Neil had to take on my job as Mom while also caring for me. He showered me, shaved my legs, dressed me, etc. I had a nurse and PT come daily to check on me and get me up walking. At that point, I was not allowed to leave my bedroom without a physical therapist.

The kids started school and I was determined to walk them into class. I was still 20 pounds underweight. I had to wear my plastic shell back brace and use my walker with tennis balls attached and yet, my kids were so proud of me that day. It was the first time we were out as a family again. I remember thinking in that moment that I will get through this and it’s all because of these kids. These kids who had to see their mom go through Hell and back and were stuck along for the ride. I willed myself to keep going and to keep trying. I was in physical therapy two to three times per week and eventually after months, I was able to go from my walker to a cane! During this entire time, I still didn’t (and I still don’t) have any feeling in my left leg or feel it touching the ground. Doctors were amazed at how well I was doing considering, and said that being a ballet dancer has attributed to why I am able to walk without really feeling it.

After weaning off all my meds, I was finally hungry! I began eating more and working my leg more and after a whole year, I was finally up to my pre-surgery weight (I have a freakishly high metabolism).

Now

It will be two years on July 5th. I am still struggling with my leg daily, and it’s up and down with my back pain. It seems the last two levels that attach to my pelvis aren’t doing so well holding all the weight from the fusion and so I will most likely need another surgery to fuse them sooner than later, which gives me panic attacks. I have been having some issues with my bowels that don’t seem to be getting better and I am in the process of trying to get that figured out. Even after a trip to the ER, a CT scan and a colonoscopy, we still aren’t sure what is happening. With that said, I definitely have plenty of good days now mixed in with the bad and I am grateful for that. I am also  not in my ballet studio full time like before and I am not able to do quite a few things which is hard on me emotionally. However, I try to be there as much as possible and we just ended the school year with our Swan Lake performances.  I just love it so much, I can’t let go. I take my own barre during my advanced level classes, when I am feeling up to it, and I even try doing some steps across the floor. This is where I notice the degree of severity from the spinal cord injury. I feel like I am dragging my left leg along for the ride as I dance. This is something I will continue to do and won’t give up on. My limp is almost non existent now and I don’t need a cane to help me walk. I try to take comfort in knowing that at least I was able to overcome that obstacle. I have been out of physical therapy for six months however, Neil urges me to go back. My leg has already developed signs of atrophy and in order to stop that, I will need to actively work that leg to keep the muscles moving. As recently as last month, my leg gave out in aisle 14 picking up dog food at Target.

A new revelation since surgery is that our sweet Emma was diagnosed with scoliosis at 7 years old and within 7 months, her curves progressed enough to alarm us all. She has now been braced since Christmas. I can’t help but feel incredibly guilty and sad over this. I feel like it’s all my fault. Our perfect little Emma must now wear her brace 20 hours a day. She has done amazingly well and rarely do we have a problem with her not complying to wear it. I think she knows how severe hers will get if she doesn’t, and we are trying our very best to prevent what happened to me from happening to her. She has been incredibly brave wearing it to school not even hiding it under her clothes. When the children at school ask her about it, she explains to them that it’s just like someone needed braces for their teeth, she just needs it for her spine. Every night when I peek into her room after she falls asleep, I tear up seeing how uncomfortable she looks with her 7 different pillows propping her up and think about how hard all of this must be for her. She will need to wear a brace until she is done growing, which could be another 8 or 9 years.  I am beyond proud at how she is handling this and although I feel horrible, I also feel like we are now on this journey together and I am her biggest advocate with plenty of knowledge on the subject. I refuse to give up fighting for not only me but her health now as well.

June is Scoliosis Awareness Month

Over the last few years as I have shared my story, it not only helped me break free from the stigma of needing to look a certain way, but has built my self confidence ten fold. If I hadn’t started Scolimom and began blogging about my journey, I wouldn’t be where I am today with a successfully growing Fashion and Lifestyle blog. I would have never imagined that I would be comfortable enough with my body, to basically showcase it on social media and feel confident doing so. This quiet dream of mine has turned into something I love doing and feel like I am fairly good at. And to the contrary of some naysayers, it has never been about wanting to be the center of attention. With my surgery and the spinal cord injury affecting my leg, I had to mourn the loss of my passion in dance. Yes, I can still teach, but something I have done so effortlessly and beautifully over the course of my entire life thus far was taken from me. That creative energy that I had balled up inside, I decided to use towards this blog. And although some people thought this idea was crazy, I again, am proving that when you pour your heart and all your effort into something, you can and will succeed.

I have met so many incredible people over the course of this journey. Recently, a designer in NY reached out to me to collaborate on a handbag and coincidentally, her own daughter may have had it, but she didn’t know much about it. I urged her to have her daughter x-rayed and checked. Sure enough, her daughter needed to be braced and received her brace this week! It makes me feel SO GOOD to know that I have helped someone who now has a chance to get her scoliosis under control! This is what it’s all about, truly!

I blog about my favorite midi dresses and how much I love gingham (which I love to do, btw). However, if I can help families learn more about this disease and help people in the process, it’s an enormous cherry on top and why I started this to begin with.

Scoliosis affects approximately 2% of the US population with an even smaller percentage becoming severe. Severe scoliosis like mine, can cause nerve damage, breathing issues, arthritis among other serious complications if never treated. Schools don’t check for scoliosis like they used to and not enough information is out there for parents regarding this diagnosis. Once a child is diagnosed with a large curve and they have not reached puberty, bracing is an option to slow down or stop the curvature from getting worse, although not guaranteed. Emma will continue to wear a brace for the next 8 or 9 years which means getting a new brace approximately once a year. We pray this stops her scoliosis from progressing, but will take the necessary steps needed if surgery is on the table. I have researched different methods like Schroth to help work with the bracing efforts and will continue to gather any and all info I can to make the best decisions for her health moving forward.

Currently, I am looking into beginning a foundation to help parents with the cost of these braces as insurance does not cover them 100% and they are very costly. If you are a company who would like to collaborate with me on this, please email me.  I am also in the process of migrating ALL Scolimom posts over to CCG and they will be available on a special page. If you feel so inclined, you can take a look in depth at those after you read about my favorite midi dress!

Thank You For Reading

If you have read this entire novel of a post, thank you! It’s not something I talk about much on CCG but I felt it was important to share. If you have scoliosis or have a child with it, please don’t hesitate to reach out. I am always available to answer questions followers have and love being able to help. I have now learned to wear my scars proudly because it’s who I am and tells my story. If you would be so kind and share this post on your social media channels to help spread the word for Scoliosis Awareness Month, it would genuinely make my day. I would love to share my story and help more people in the process.

More importantly, I hope you take away from this post that when you are determined and believe in yourself, beautiful things can and will happen.

Before and After Pictures