April's story

Hello everyone! Today I am going to share my first story that I received from one of you! Today's story is from April and I hope that you can benefit from it in some way.

"Hi fellow Scoli Strong Warriors! I’m 42yo and live on the east coast of North Carolina in Wilmington. I was diagnosed at 8yo and tried bracing, but I wasn’t compliant due to kids picking on me at school. So I would take it off and hide it in my locker all day.

Unfortunately I can’t remember the degree of my curves, but roughly by 15yo they were around 30-40 thoracic and 50-60 lumbar. I had my first spinal fusion surgery at 15yo in 1994 and have Texas Scottish Rite rods. I was fused T1-L3. My surgeon admitted that he was not happy with the lack of correction that he got. So my lumbar spine is still very crooked and I lean to the left now.

By my late 20’s to early 30’s I had degenerative disc, spinal stenosis, bulging disc and herniated disc aka Adjacent Segment Degeneration. After years of letting myself suffer in chronic debilitating pain, I had a 2nd surgery fused to S1 with screws into each hip in 2012. Then in 2014 my new rods broke when I barely bent forward at work. I heard and felt a huge pop and shift which was followed by excruciating pain. I drove myself to the ER and the broken rod hid in the X-ray’s. So along with my surgeon I decided to wait a few months until after the holidays to have exploratory surgery. Then the first week of January 2015, I went to the bathroom to urinate and wipe from the front and boom the right side broke and my husband even heard it break from the next room.

The pain was so excruciating and I immediately called my surgeon to schedule a 3rd surgery. So February 2015 the broken hardware was replaced with additional hardware added. They lost control of my pain both surgeries while in the hospital and it felt like I was laying in a bed of golf balls. I also ended up with thrush which caused horrible mouth sores thanks to all the antibiotics that they load us up with and no one helped me with oral care while in the hospital.

Over the years I have tried numerous therapies to help with my chronic pain. This past year I finally had a major breakthrough once I added CranioSacral therapy to my weekly regimen of medical massage and PT. I see two different PT’s at the same facility. One is gifted with the CranioSacral therapy and the other focuses on dry needling, cupping and strengthening exercises on the Pilates reformer. I’ve been in physical therapy for many years, but it’s definitely been medical massage therapy along with CranioSacral therapy that has helped tremendously with my chronic pain. I can’t recommend both of these therapies enough and they are medical necessity for us Scoli’s.

While my journey has been a difficult one, I’m so thankful that I’ve finally found the right combination of therapies that tremendously help with my chronic pain. I now also dealing with neck issues above the fusion. I had an MRI in April that showed degenerative disc, spinal stenosis and bulging disc at numerous levels. I get horrible headaches from it and there are days that my neck hurts worse than my back. The current plan is to try cervical facet joint injections, but I know it’s just a bandaid to needing more surgery one day. I’m not willing to have my neck fused since I’m already so fused, but I’m willing to have disc replacement surgery when the time comes.

I’m an open book about my journey, so feel free to contact me if any questions whatsoever. I can also help with finding some options for medical massage if anyone needs any help. Stay Scoli Strong Warriors!"

I am so happy to share April's story with you all! April has also sent me some information about medical massage which I will share next week (I didn't want this post to be too long haha).

If you would like to share your story with others you can DM me your story on Facebook (BackTalk Scoliosis Support Group) or send it to backtalkssg@gmail.com I will then review your story and copy and paste it into a blog post!