On The Mend: Healing and Feeling Fine From Scoliosis Fusion Surgery

Photos, story by Cassie Hepler

From the last post I made, I have progressed so much it is actually unbelievable sometimes. Since the first physical therapy session at Novacare in Bala Cynwyd in April, I have been making “double progress” as my physical therapist Chip said. The last time I went, I got yelled at for trying to do a plank on my own at the gym because I’m “not ready yet”. However, I can now do a plank with ease at 20 second intervals. The next challenge? Working back up to side planks which used to be easy for me to continue to straighten out the fusion (I still lean a little to the left).

X-rays taken May 16, 2016 at Bryn Mawr Hospital. The right of the photo is actually the left, see the little “L” above my seemingly right shoulder. They had me face the X-ray machine this time which they have never done before.

Side view of X-rays taken May 16, 2016 at Bryn Mawr Hospital. A frequent question people ask me is how long are the screws? Well, according to Dr. Heller’s surgery notes they are 5.5 millimeter titanium screws and 6.5 diameter cobalt chrome rods.

And that’s the Catch 22 about healing from a scoliosis fusion. I feel like I could run a mile most days however I’m not even supposed to run yet, maybe work up to a light jog as my doctor said. In reality, I want to go to the gym every day and then go out at night and see my friends but that is not realistic. So I reserve my energy during the day if I have a project at night and vice versa. It is a constant battle dealing with my Type A personality! I am slowly doing full days however 8+ hours and driving downtown and back, errands and more is very tiring for me. The true test will be driving down to Laurel, MD in June to spend time with one of my friends then road tripping with her as passenger down to Charleston, S.C. I will bring my trusty small blue foam pillow that has served me and my achy back well!

Today I sold the granny walker on Craigslist. It felt good to get rid of it and help someone else along the way. It was also a chapter in my life I would like to laugh at as a soon to be distant memory. When I first started walking about, my goal was a couple miles a day without the walker, my right leg was numb all the way down to my knee. I literally had to look down to make sure ol’ righty was keeping up. It was, I just couldn’t feel it. As I keep moving and going to physical therapy, that numbness is now a small band that wraps around my right hip from my back to side where they shaved the hipbone to add to my spine. I also get these lovely little stabbing shooting pains in that area however I can feel again when it happens so I know feeling is coming back. My doctor says that band will continue to shrink until it is gone. My physical therapist claimed this may be my new normal and I assured him it is not.

Coming off those narcotics (Oxys and Valium) was tough. Mainly my sleep schedule was non-existent. I would flip flop around (the best I could as I had to sleep mostly on my back like a vampire) all night long, barely getting any rest which did not help me get any exercise. It was a vicious cycle. I tried melatonin and finally succumbed to Tylenol PM, my go-to when I’m wide awake for hours. I’ve added trying to sleep on my sides to the mix now with it being more comfortable on the left for some reason.

One thing no one tells you about is how will you shave your legs if you are not allowed to twist or bend all the way yet? This was something I struggled with as even putting Nair on to burn the hair off was impossible. Some people from my group showed me some shaving extension gadgets but I still could see me twisting with it. So I went up the street to the ladies who do my nails and they hooked me up with the cricket wax as I call it, smooth on bottom, blond hair left on the thighs.

First she places the wax on in smooth coats.

Then a firm press to get the hair to stick.

Rip! Off goes the hair. Some people said it hurts too much. As one of my friend's said, after what you've been through this will be nothing. And it was. — Rip! Off goes the hair. Some people said it hurts too much. As one of my friend’s said, after what you’ve been through this will be nothing. And it was.

Gross! I'm just not hippie enough to have dark leg hair. Good thing my thighs are blond! — Gross! I’m just not hippie enough to have dark leg hair. Good thing my thighs are blond!

Something else no one tells you is that you will need to get slip on sneakers. Because as soon as you are left to fend for yourself, there is no way you are going to reach to tie your laces. So I ordered some Sketcher knock-offs online in pink and black since they will be temporary sneakers until I can get my beloved Nike’s back on. I wonder if not having sneakers at first kept me from healing even faster but we will never know.

Further limitations still include no full bending or twisting, so lunges and squats are my go-to to pick things up off the floor. I will hopefully have buns of steel this year! Driving is also hard without twisting. My future car will certainly have a back up camera, built-in GPS with internet, heated seats and fully adjustable driver side seat.

Picking back up the groove of my online blogazines in May, Explore-Philly.com lead me to an ironic turn of events. One of my photographer friends who has been supportive through this healing period, Drew Callaghan Photography, informed me about the Setting Scoliosis Straight scoliosis gala coming to the Pyramid club. So I reached out via email to the co-founder and she immediately emailed back, offering us tickets to come, cover and celebrate together. I also included her in the Facebook Scoliosis Group so her and her son have support through his journey with scoliosis.

A lovely view from the Pyramid club at sunset.

All dolled up in a gown with camera in tow. Miss Teen New Jersey was there and exclaimed how at 6 months she was barely functional. I was 3 months post-op here.

Another reminder of all the beauty and amazement in the world yet to come!

At the scoliosis gala, I learned of a new technique called tethering, which is ideal for children who “have a diagnosis of idiopathic scoliosis (adolescent or juvenile), or idiopathic “like” (i.e., post-syrinx decompression); are 10 years of age or older, with remaining spine growth; have thoracic, thoracolumbar or lumbar curve(s) of 30 to 60 degrees.

The idea is “growth modulation” – partially restraining one side of the spine to allow growth on the other side – to reverse the abnormal scoliosis growth pattern in the anterior thoracic (upper) spine in a less invasive surgery. Titanium pedicle screws are placed on the convexity (outside) of the vertebrae that are causing the scoliosis; a tether (a white polyethylene-terephthalate flexible cord) is attached to each of the bone screws in the vertebral bodies of the spine. When the tether is tightened, it compresses the adjacent screws to help straighten the spine. The affected curve(s) show an immediate improvement right after surgery, and continued improvement over time as the spine grows.” Click here to learn more.

I also discovered a slipped disc surgery on Facebook that gets rid of the need for rods completely as that is currently the only option to keep the spine straight for adults.

Since medical marijuana is now legal in Pennsylvania for medical use, I asked the doctor about using it for pain control someday. If I do end up having pain, I would much rather take this natural herb as a better alternative than oxys and valium or any other pharmaceuticals. My high school essay was not a waste after all! He agreed however they do not dispense it there yet, I would need to go through my primary at Drexel. I would also not be allowed to smoke it as smoking of any kind will ruin the fusion. He told me to bake it, and reminded him my best friend who came to previous appointments is a pastry chef. He got a loud laugh out of that.

And so much for getting a tattoo. Considering I will be fully fused in 20-30 years as the bottom two vertebrae will be getting all the use, that would make for one botched ink art piece!

According to Dr. Heller, the curve is currently between 10-20 degrees. We forgot to measure it on screen as we were extra busy that day. I was also being interviewed for a story for Jefferson Hospital’s blog that day by their marketing department and a photo with Dr. Heller. In the meantime, he wants me to lean to the right and strengthen that side in physical therapy to pull the fusion straighter while it continues to heal. The total healing time for my spine to completely graft bone over the new spine? One year. When will I ever be able to twist again? One year. There’s lots of log rolling going on.

So far though I do not have any pain and no pain medication needed. Yes, the rods will remain inside me for forever and no it doesn’t hurt amazingly. Think of it like architecture. Rods and screws are built around my spine into the flesh as a support system. And physical therapy are the ones making sure it stays solid about once a week and leaning the right way.

How much did the surgery cost? It cost my insurance $300K. I have Obamacare and a platinum plan through Blue Cross with premiums at almost $400 a month. Co-pays for the hospital and “rehab facility” were $250 a night with a max charge of 5 days for me. X-ray and doctor visit copays are $30 each and X-rays are required for each doctor visit.

For about a week straight, I began having some moral and ethical issues of having children and passing it along to them. The dilemma was gripping my heart tightly so I reached out to get some facts from my doctor via email (yes, good doctors email you back). And as usual, he set my mind at ease as I couldn’t imagine moving forward knowing small children would have to suffer through this surgery.

“There is a genetic predisposition. That said unless you have many female family members with scoliosis your case is likely sporadic. There is a saliva test to see likelihood of progression of scoliosis. From what I understand it is not very accurate. And don’t think it will be helpful. I will look into if there is any other genetic testing,” said Doctor Heller. The good news is my father is the only one with scoliosis in my family and a small curve at that less than 18 degrees which is considered slightly normal range. I look forward to hearing more and getting tested in the future to put my mind at ease.

Stay tuned for the next post soon about professional photos of my scar and more with Mark Harris Photography!