Taylor's Fight Against FND

Story

March 2020, the whole world felt like it was in turmoil with Covid. Little did we know, it was also the start of Taylor’s still ongoing battle with chronic pain, frustration, and learning more about the medical and insurance world than anyone her age should have to know.

It started with some knee pain. Due to Covid shutdowns, Taylor was attempting to do her dance classes virtually. We initially thought the pain was caused by her trying to dance in our mudroom rather than the softer floors in the dance studio. Taylor loved dance and it was a huge part of her life and made up much of her identity. Forte Studios was her second home as she was in Ballet, Tap, Modern, Jazz, Pointe, Hip-Hop as well as being a part of X-Tension Dance Company.

The knee pain continued for two months and increased in intensity. On May 22, 2020, Taylor went to her doctor about it. They couldn’t find anything wrong so some stretches, rest, a knee brace, and icing were suggested. That didn’t help. As the pain increased and extended into her tailbone area, we took her into Urgent Care one evening because the pain became unbearable. The doctor there couldn’t find anything wrong and sent Taylor to Sports Medicine. The doctor with Sports Medicine thought for sure Taylor had a broken tailbone and instructed her to rest and not to dance for six weeks. That was tough for Taylor to sit out of dance completely for that long, but figuring she would feel better at the end of the six weeks, she complied.

Six weeks later and then some, the pain was still increasing, and Taylor had been doing everything she was told to do. Things were getting more frustrating. X-rays had been done and were not showing anything. Physical Therapy was then recommended. Taylor went through PT, learning more stretches and strengthening techniques and rejoined dance as she could tolerate it with her pain, but the pain just continued.

Eventually it was decided that an MRI should be done, but not without battling insurance! It took three months of battling, including a doctor doing a peer-to-peer with the insurance company to explain why it was needed. They finally complied. Luckily, the MRI gave us some answers, along with a whole new world of questions and terms we had never heard of. The MRI showed Taylor had something called Bertolotti’s Syndrome, or more specifically to her, L5 Transverse Process. Her L5 vertebrae had tried to grow another vertebrae that attempted to attach to her sacrum, but it didn’t completely form and basically became just an extra piece of bone hanging off her L5. When she would move in certain ways, it would pinch nerves and cause pain.

People with Bertolotti’s Syndrome typically don’t have any pain from it or find out they have it until they are in their 40’s or older, if at all, unless they are dancers or gymnasts because of the movements they do and how their bodies develop and work at younger ages. Finding out the results of Taylor having Bertolotti’s Syndrome, we thought we finally had our answer! There was a whole list of things she could attempt to ease the pain and in the worst-case scenario; if they didn’t help, she could have a spinal fusion. So, we spent months taking Taylor to more Physical Therapy, trying different pain medications, acupuncture, dry needling, massage, rest, heat, ice, lidocaine patches, tens unit, and the worst part, giving up most of dance. The pain still continued to increase to the point that the surgery became the only choice.

In March 2022, Taylor had her L5 and S1 fused together, and the disc in between replaced with a hard plastic “cage”. She spent several days recovering in the hospital, then followed up with a third round of PT. Taylor had a slight decrease in pain for a short time, but not long enough. Taylor tried to get back into dance, start working her hostess job again, and do things other teenagers do. As the pain continued, she missed more and more days of school, and was sometimes bedridden for several days at a time. She missed more and more dance and had to drop more classes again. She would try to work and would end up leaving early many times, which she hated. Taylor continued going to different doctors and specialists including Pain Management, Dance Rehabilitation, continued Physical Therapy, and more. Nothing seemed to help.

This October, Taylor started experiencing a new pain. Her left leg began going numb and tingling, as well as a rapid start of unusual spinal pain. Within a few hours one evening, she lost the feeling in her left leg almost completely and started having tremors. We decided to take her to the ER and by the time we got there, she couldn’t walk and needed a wheelchair and was having tremors so bad she appeared to be having a seizure. Her pain was at a 10 on the pain scale, which she had never said before. After a couple different pain medications in the ER, the pain wasn’t coming down and the tremors continued, but did lighten some. Her neurosurgeon found out what was going on and had her admitted trying to get her pain under control and figure out what was causing her tremors. He told Taylor he would do everything he could to get to the bottom of what was going on. Taylor spent 6 days in the hospital and had numerous tests done including an MRI on her lower back, a Full Brain and Spine MRI, X-Rays, CT scan, blood work, kidney scans, EKG, an experimental PET MRI, and many more. It took copious amounts of pain medications to even touch the pain, but it never did go away. She couldn’t walk without the use of a walker and was very shaky and unstable. If she needed to go longer distances, she needed a wheelchair. Due to the process of elimination and the symptoms she had been experiencing, she was diagnosed with Functional Neurological Disorder (FND) with
Hypersensitization.

This condition is typically caused by trauma or prolonged chronic pain. FND affects people differently, but most experience tremors in their legs, have difficulty walking, and seizure like episodes. Many people who are diagnosed with this disorder take years to get a diagnosis because they are bounced between specialists for different symptoms but not looked at as whole. She left the hospital after 6 days with a walker and wheelchair. Somedays she will be able to walk okay on her own, others she may need one of the mobility aids. We have found an outpatient program in Milwaukee that is 4-6 weeks of intense therapies Monday - Friday. We will have to stay at a hotel or rent an apartment while she gets these treatments. The Barneveld School is being great at making plans for her to continue her schoolwork while she goes through this. Luckily for us, we have flexibility with our work that will allow one of us to stay with her during the week and work from there.

We just need our insurance to cooperate! Insurance is always our biggest barrier to the next step of help. We are hopeful that this treatment program will be effective and get Taylor back to better than she has felt in years. We are not the type of people to ask for help, but Taylor could use the support of everyone to get her through this. Taylor may be small, but if you have ever met her for more than 30 seconds, you know she is not weak!

Thank you for all your support!