T3fitt Scoliosis Podcast

In middle school around age 13 Kerry noticed she started to have pain. After doing a few toe touch tests, nothing was noticed, though she had a significant curve. In high school, she was playing a lot of sports, during which she was given a brace & told “wait & see.” Not understanding what was happening, she & her friends would make a joke out of it. She wore her brace at night though she was told to wear it 24/7.

While in college her pain became so significant that surgery became her only choice, though she wanted to put it off. She decided that Christmas break would be the best time to have surgery, thinking it was no big deal. Break was over & she flew back to school & was carrying her books living her every day college life. 

Practicing for almost 4 decades as a Chiropractic Orthopedist and author of 'Healing The Human Machine.’

Dr. Hargis, a graduate from Palmer College, he wanted to specialize in Orthopedics because that was most germain to patient population he was seeing. 

Once making the decision into Orthopedics, he went through an 3 1/2 year orthopedic program at NY chiropractic college. 

Along the way, he started treating people with Scoliosis. During this time, he saw X-ray of patients, noticing leg length discrepancies. To his surprise, radiologists never commented on these. 

Dr Hargis shares his a rational perspective. X-rays are taken from a standing position. This should be an easy observation to see as a leg length discrepancy. Dr. Hargis explains. The spine made up of 24 moveable vertebra sitting on a pelvis. If one leg is shorter, you’re going to have a pelvic tilt. In Dr. Hargis, opinion the leg length discrepancy is never discussed. If a lift were put in the show, while tracking the scoliotic patient, 

“there would be no money to be made.”

Dr Hargis, questions “why Scoliosis isn’t evaluated properly.”He breaks this down. 

Dr. Hargis dives deeper into the connection of body balance in his book, Healing the Human Machine along with equipment he has designed to help patients. There is a way to balance & correct the body if you understand how to do it. 

He emphasize’s how important exercise is.

“Balance them from the ground up.” Good spinal mobility is important. One way to get them is through spinal manipulation. 

“Doing the right therapy avoiding the wrong procedures.”

Where can you find Dr. Hargis:

This is a guest you don’t want to miss! Dr. Hagit started at Hospital for Special Surgery in NY after finishing her education in Physical therapy. There she met, one of the greatest spinal surgeons Dr. Boachie, lead Chair of Scoliosis Society. She asked to follow him to help in his foundation going to Ghana helping to rehabilitate children with complex spinal surgeries. 

Dr Hachi, was a believer of not operating on children but instead conservatively doing research that could help. He would prefer to operate on 1 out of 10 children. It is the guidance & help of Dr. Boachie that Dr. Hagit was able to reach her education for conservative management.

Dr. Hagit found the Schroth Clinic in Germany & signed up for the 10 day course. Continuing her education, she studied the Barcelona method with Dr. Rigo. 

With her education, Dr. Hagit has since opened her own school with her partner, of online learning Scoliosis and Spine Online Learning  (SSOL)

How does Dr. Hagit work. She’s based out of NY & Israel but she has patients from all over the word. Dr. Hagit dives into what happens if you’ve have a spinal fusion & what you should do post surgery depending on what type of surgery you’ve had (tethering vs. rods). How far along are they post surgery. 

Some of the techniques for curves & spinal fusions can be the same, breath expansion, lengthening. It’s similar but individual in many ways. 

Dr Hagit shares a story of her 87 year old client. The devotion of her client has with her mat and mattress marked for alignment. She practices 7 days a week. “She will forever be my role model of compliance.”

"Compliance is number in success!”

Dr. Hagit shares another story, a teenager in NY with a 51 degrees. With 6 opinions she was told to have surgery. At the last orthopedic appointment, her surgeon suggested Schroth & bracing. “You’ve got nothing to lose” 

With Dr. Hagit’s exercises, her curves went from a 51 to a 30 & NO SURGERY! Dr. Hagit emphasizes how important the family support is. It’s crucial for the success. 

It was Dr. Hagit that brought Schroth to NY. She brakes down the process of why it took so long to come to the states. “When there is more experience, there will be more documents.

We are an adjunct to the patient. Deliver the hope through your voice, your hands & your education. 

Where can you Dr. Hagit:

Instagram: SchrothNYC

https://www.schrothnyc.com

YouTube: https://www.youtube.com/@hagitberdishevsky6821

Kay has lived with various conditions since his teens. One of those is Ulcerative Colitis. He had been consistent going to the gym. Noticing the progress he had made. One day he noticed, he stopped. It had been a month, then 2. He was weak that he had to use crutches. Kay, went to the hospital. He had a 50% blood loss. He stayed in the hospital for 3 weeks. Slowly he gained his strength. He started to train while in the hospital.

Sara’s story starts around Christmas when she was diagnosed with Breast Cancer. Starting with Chemotherapy, they installed a port under her skin. This was the first operation she had since her fusion. Not having flash backs but remembering what it felt like to have surgery the emotions felt familiar. While this is going on, she was also getting certified in Steel mace flow.

It took a while to get used to training with her mace while having the port under her skin.

They share how the mace has helped with recovery.

Sara shares the emotional space is huge. I’m the strongest I’ve ever been. The mace gives me a habit to move & think positively.

Kay the mental as well physical were huge. Once I discovered the rotational line of movement, I discovered it heals entire body.

His determination kept him motivated to revisit his training with the mace, no matter what the weight.

When we have to take baby steps, it’s an opportunity to self reflect.

Chris shares his focus on teaching how people can navigate health wellness, sports medicine, orthopedic injuries & orthopedic surgery. How they can stay fit so they can avoid seeing him. He uses social media platforms (primarily YouTube)

He takes every day occurrences & pulls out the injury aspects & discusses it in those contexts.

When he first started to practice, he made himself a promise- he was not going to be the physican who’s patients wouldn’t understand what he was talking about. He made a concerted effort to put it in a context in which people could understand. “I wanted to be a good teacher. I wanted to break it down, so it’s relatable, easily consumable, easily understandable as well as enjoyable. His goal is to make you smarter. So people are armed with information to make better health choices.

The goal is to educated better understand and make health choices.

He shares general content talking about the how, the what will happen & what to expect.

He strongly enforces that if you are in pain, no one is fixing the pain but you. You are the one who is taking control to educate & fix the problem. If you’re in pain, is there a way to modify what is causing the pain.

Chris is a straight shooter. His purpose is to help you whether with him or guide you in another direction.

Where can you find Chris:

Heather Florio & Ingrid Harm-Ernandes co authors The Musculoskeletal Mystery: How to Solve Your Pelvic Floor Symptoms

Heather founder of Desert Harvest - Ingrid at PT Pelvic floor specialist share their knowledge & passion of the impact your pelvic floor can impact Scoliosis & how using exercises & tools strengthen your pelvic floor. 

Ingrid dives into “Your body is your house. The pelvic floor is the foundation.” A simple explanation for everyone to benefit from & understand how important pelvic floor is & works.

With Scoliosis, the curves can cause the house to be ascue to one side leaving the body to adjust. Over time, it can be hard for the body to adjust. This can lead to a “breakdown.” With exercises of strengthening of the whole core & products, you can help to stabilize the pelvic floor. This along with products that can be used to strengthen tissue health.

In their book, they share specifically how to do a pelvic floor contraction floor exercise. Sometimes products are required to help with pelvic floor strengthening. This is where Heather’s products come in. Sometimes muscles can be so contracted that need to relax. One of Dessert Harvest products (the wand) helps to relax the pelvic floor muscle groups. To accompany the wand, Heather shares products that are naturally made to replicate the body.

With Scoliosis the pudendal nerve can be impacted causing pain. A CBD that Dessert Harvest offers showed that peoples pain was reduced by 54% within 24 hrs.

To find out more, listen to their episode.

Where can you find Heather & Ingrid:

Surgery Pal, a mobile app & website created by researchers at Children’s Hospital to help teens who are undergoing spinal surgery. It’s a program that helps teens prepare for before & post surgery.

Jennifer is a pediatrician, anesthesiologist  pain doctor.  She & the team at Children’s hospital got started on this mission after hearing teens & the struggles they go through. “As health care providers, we could do a better job of supporting teens.”

Teen surgery doesn’t just impact teens, it trickles into the family. Because of this, Children’s Hospital understands the importance of this. That is why, they have 2 versions. One to help support teens, the second to help families move through the process at their own pace. Some of the tools that they teach are how to alleviate stress through breath.

The tools aren’t just to prepare for before or after surgery. The tools can be implemented into life. The feedback they have gotten from patients, it was easy to participate. It's very accessible.

A few of the tools for parents,  what to bring to the hospital to getting support from other families who have already been through the process. 

Currently they have 32 centers that are referring teen patients.

This is available to anyone who meets the criteria in the US. You can go to their Website & apply.

Where can you find them:

The REAL MR. MACEMAN

Rik has always liked working out since his teen years. At the time there was a strong consciousness of body building. Everyone wanted to look like Arnold Schwarzennegger. I trained hard but I didn’t look like them. I got stronger but was frustrated.

It was during Y2K, kettlebells became popular in the states. The only place to get certified was in Minnesota. He got certified & went back home to California, having a few kettlebell clients. One of them wanted to to video Rik training with Kettlebell for an upcoming DVD. It was at the shoot that he was introduced to the mace.

He started training his private clients with the mace. In 2013, he decided to do a seminar. 18 people showed up! Rik got excited. If he could do with 18 people why not do it again. That’s exactly what he did. Rinse & repeat. He kept it close to home staying in the San Diego, LA area. Then he got a call from a gym in northern California asking him to come & couch. The ball kept rolling, in 2015 he got call from New Mexico. Rik has since taught in Ireland, England, Germany, Italy. To date Rik has taught 56 seminars ranging ages from 15-81!

I asked Rik, what has the mace given you? A creative feeling. Either I chose the mace or the mace chose me & I haven’t even scratched the surface.

Where can you find Rick Brown?

In this episode, we’re going to across the pond! One day, while lifting her school bag onto her right shoulder, her mom asked, what’s that on your back? Noticing her ribcage being twisted. They went to a doctor who confirmed she had Scoliosis with a 30/35 degree curve. Her curves quickly increased. At that time, there was no pilates, no yoga. Everything was sports driven.

Living in a lot of pain & no exercises, it got worse. At age 15, she ended up having “full corrective surgery” of 12 + hours for her first surgery where she would have Harrington rods. Surgery was complicated, 4 ribs removed & 2 liters blood loss. She’s never forgotten that moment.

After surgery, with multiple scars, she found out she’s prone to Keyloid scars (when your body produces too much tissue).

Recovery took about a year. One of the hardest things was sitting up. It was at this time, her dad thought she should be moving better, living a more “normal” life. They went to get an X-ray just to “make sure everything was okay.” They found that 2 screws where lose in the lower region and that they were grating her spine. The only answer was to revisit surgery.

She went forward with the surgery. Recovery was again slow. Since surgery, has a lumbar curve forming. She is still living with Kyphosis.

She now lives with her scars looking at them as beautiful. This has helped her to find new therapies, & possibly revisiting surgery.

There are things you can do to help. If I could pick one thing, it’s the mindset, the affirmations, the repetitions. Keeping the balance.

I love who I am. I’m connected to my body. I’m concocted to my heart. I’m connected to my soul. I am safe. I am grounded in my body. I know I am enough.

If you focus on what you don’t want, then you’ll never get what you do want.

Where can you find Annabelle?

With 23 years of professional experience, his dive into the field exceeds his career. Growing up with his father being in the field, he was exposed at a young age. I was always interested in anatomy, so the fit felt like a perfect match of wanting to help people. Upon his graduation, he had the opportunity to work with his father, who was one of the first to get into this field in the 70’s. Times have greatly changed. There’s good chiropractors & bad ones. Jason advocates, to do your research.

Chiro’s help stabilize the spine, slowing down the progression of the curves along with strengthening the muscles.

With congenital scoliosis, it’s difficult to reserve the curve. He keeps it real, “Be weary of chiropractors promising too much.” A chiropractor can help manage pain, range of motion & stabilizing the spine through exercise. While all of this is important, Jason admits it’s only going to be as affective if patients are willing to do the work & work with you that will lead to the best results.

If he has a patient that has more than a 30 degree curve, he sends them to an orthopedist. Determining the degree of the curve, Dr Cooney, goes through a series of assessments, “muscle testing,” check range of motion, get their baseline findings. From there, he develops an exercise program. He is a firm believer that strengthening & flexibility are equally important.

If also emphasizes that if treatment isn’t working that he will redirect the patient who will then be reassessed in 4-6 weeks. Generally this will last approximately 3 months. After that, the patient will be on as needed maintenance.

His patients range from young adolescent’s to adults in their 50’s. For some of the adults, it’s the first time, scoliosis has ever been addressed.

As a chiropractor, Jason is a firm believer that you can get the job done without being ruff. This is very different philosophy than the old school method. It’s about technique. If you have the proper technique, then you shouldn’t be scared of an adjustment. You can “Be gentle while still getting the job done.”

With spinal fusions there does come limitations. Some of those limitations are additional pressures that can be added to the spine where there is no fusion. This can cause those areas to work harder. He talks a variety of ways to help relieve muscle pain. Muscle stimulation, ultrasound, trigger point release, active release, just to name a few.

“Motion is lotion.”

Where can you find Dr. Cooney?

Rick a Sports Orthopedic Physical Therapist with 25 years experience quickly learned that his clients had chronic pain. When he opened his clinic he discovered that patients patterns were the same but the outcomes were different.

In medical school we were taught, "look at the damaged tissue, treat it & out you go!”

His unique perspective dives into WHY tissue is damaged. He shares his approach on Scoliosis a “systems method to solving pain.”

The back pain that people are having often isn’t from Scoliosis.

In medical terms, Scoliosis is defined as a lateral curve. It doesn’t talk about the WHY the curve is occurring. It could be genital, structural or functional curve.

Rick talks about gate patterns & how to help correct the “scoliotic forces.” One of the exercises, he refers to is the “butt pump.” He discuss’s the difference of bent knees vs locked knees & its impact.

Rick talks about the connection of Sciatica & Scoliosis. If you’ve got a right side bend, you’re going to have right side Sciatica. Sciatica is however not just due to shape of the spine. Other factors such as tightness of thigh muscles can pull on the pelvis. This can contribute to Scoliotic curve. He suggests that if you have an S curve, there could be an old injury in the Sciatic leg that is causing the Sciatic pain which needs to be addressed.

Rick shares any easy at home tip that can you try on. He talks about the connection between neck pain & headaches & how they can relate to Scoliotic curves. The cause of most chronic neck pain & headaches come from the shoulder girdle system. Rick goes into details on release methods in his home programs, which can be found on his website. One method he talks about is taping & how powerful it is for getting rid of chronic neck pain as well as headaches. He also mentions a downside to taping.

Rick has a philosophy about pain and how it is lodged into our bodies.

Paul Wolkowinski Master teacher & mentor to so many people in the Gada,  (original form of the mace) Clubs & Meels community shares the history & personal journey of training. Originally he started with kettle bells & was attracted to the ballistic & circular movement of them.

In 2007 Paul researched what else there was to swing. Finding a book written about Indian Clubs, which is "still my bible to this day." he decided to try it out. Having a local wood turner create clubs for him. His first time holding them he thought to himself what do I do next. Continuing on this journey, he found steel clubs but didn’t like the coldness of them.

As Paul continued working with clubs, Gada he realized how essential breathing patterns were. Breathing sets a rhythm. He describes the movement of Heart shape circle, what they become & the components they integrate.

In 2017 Paul was diagnosed with prostate cancer.  Part of his physical therapy required movement that he realized was already familiar to what he had been doing with the clubs & Gada. His recovery was expected to take 2 years but with his prior training, he was cleared at 6 months.

After going for a walk & having dry heaves, he came home & picked up a Gada. Swinging for a few mins, he felt Freedom of the chemo leaving his body. He continued swinging for 40 mins!

With patience & “letting his ego go” he started light & brought his movement & strength back.

Paul dives into the technical contributions of the Gada. Holding it upright, dropping it over your left/right shoulder, increases the weight as it falls behind, just to name a few. He shares how you can get creative in making a Gada when first starting out. 

He shares the history of Gada, Clubs, Meels & the difference between countries. Training would take place post Sunday church with everyone participating, men, women & children!

"You have to become intimate, get used holding the weight. The closer it is to your body, the safer it’s going to be.”

When Paul trains, he looks at the WHY he did move with that swing or that direction. 

Where can you find Paul:

Instagram: Paul Solkowinski

Diagnosed at age 11 with a 53 degree curve her orthopedic told her she was the quickest progression they had seen. Fused in 1997 with Harrington rods from T2-L2, Laura sustained a lot of trunk rotation. In 2012, she became a PT. During her education, she found out how little was discussed about Scoliosis. In 2017, she had her second child where she would have a lot of pain. This lead her to the importance of pelvic floor health & the connection it has with Scoliosis where she practices with clients.

Growing up, she was never in pain, always fit, but would have headaches. She attributed this to her body compensation.

As we continue the conversation, she shares that one the key focuses she starts conversation with her clients, we start with a strong back no matter where you are. Start with the mind set, your back is strong. It’s supporting you where you are.

Diving into the pelvic floor & its importance. It is the bottom of our pelvis, it’s “the pelvic floor is the floor of our core.” Pregnancy is an amplifier to whatever movement we are used to using.

Taking a holistic approach, she asks how can we better balance the muscles in your body? How can we support your body where you are.

Dr Laura, shares the importance of changing the Scoliosis language. Scoliosis is a 3-D condition. A struggle that looms over her.

Where can you find Dr. Glazebrook

To finish out scoliosis awareness month, we brought back Katelyn Carlson.

We dive into how to optimize our time of being productive of living with Scoliosis as a family unit. One of the most important things you can do is ground yourself. Look at where you’re at right now. Many decisions can be made out of desperation or fear. These decisions may not be in alignment with what you or your child needs.

How can I resource myself? How can I come to a place where I feel solid, stable? How can I trust myself? These are all questions she asks her clients, starting off with where are you at right now?

Get as much information as you can. Get your questions answered. This also comes to dealing with the using your internal resources.

Be aware of how it feels when you’re in a panic vs how it feels when you feel good. Honor the feeling, pull yourself back & take the steps.

How is different for parents vs children? Katelyn is a strong advocate of changing the language from pain to empowerment.

“You can’t do what you want until you know what you’re doing.”

Having a deeper sense of feeling worthy, in your body. If you struggle with that, “then looking at how worthiness shows up in your life is key.”

When the good feelings come up, let yourself have blue print of what that feels like.

One of the key components she checks with her clients, making sure their identity is not rooted around the diagnosis. 

Where can you find Katelyn:

Having a father who’s a chiropractor, Katelyn’s not sure when she was diagnosed. At 12, she knew her diagnosis was progressing requiring her to be fitted for a brace. Her life habits would also change, taking a bath with baking soda, seeing a chiropractor 3x a week, different exercises, eat a special diet, not allowed to participate in many sports.

Her lumbar curve was in the 30’s, leaning her towards surgery. For her first year, she followed her new lifestyle. After a year, things started to tapper off. She switched out her brace, wearing the brace until she was 18.

As time went on, she discovered the significance the brace took on. A girl who was confident running for class president, would be emotionally confined with the isolation of wearing her brace.

One thing that helped her take this on, her best friends mom had scoliosis. As an adult she was thriving, living life, giving Katelyn comfort.

Based on her experience, she was curious. The sensations, the emotional discoveries, the routine of wearing a brace & what life was like when that stopped.

She moved back home to dive further into her discoveries studying yoga, becoming a massage therapist, Hakomi training. A method of tuning into the body’s sensations a method she now offers to her clients & families.

What she discovered her scoliosis journey has become a spiritual journey & all the components that tie into it, self worth, relationship worth, financial value…..

What’s the long term impact of diagnosis.

Katelyn shares the importance of the vagus nerve, a nerve that runs through our body. When they light up, she translates that into how & where it is attacking. Using this method with clients units, gives empowerment.

During our conversation, she shares about joining SRS in Spain & what that was like. She had the opportunity to speak with Dr. Rigo, “the quality of life doesn’t have to do with the curvature of your spine but everything to do with how you deal with the diagnosis physilogically.”

Katelyn says to her younger self, you are doing a beautiful thing.

Where can you find Katelyn:

Diagnosed in junior high school, with toe touch test. She went to children’s hospital in Salt Lake City, where she would meet with 6 doctors. She did her PT, she did whatever they told her. “Sometimes it just gets worse.” Alayne would be wearing a brace for 5 years. After , they gave her about 3 years until she would puncture a lung. At 27, she had surgery.

Prior to surgery, she had a passion for ballroom dancing. Her S curve was 12 lumbar & 83 thoracic. Her twin sister showed no signs of for Scoliosis. Years later, Alayne would look back at family films, seeing her rib hump.

Wearing her brace for 23 hours a day, taught her early on to be a positive & uplifting, not allowing her curves to define her.

“were you in pain? I don’t know the difference.” Managing books for school wasn’t easy. At the request of her school, they required her to take all her books home. She quickly found that if she had a smaller back pack, she didn’t have to.

Being a dancer & performing on dancing with the stars, in an open back dress, you could see her rib hump. 2 years later, she would need surgery. Her doctors told her, her career as a dancer was over. “I’m okay with that.” One last dance in the operating room with her surgeon.

Her life took a turn. While she was in the hospital, she turned to her dad. I’m okay. It was at that time that her thought process changed. She asked herself, what can I do to change my thought process? What do I get to do today?

On her first modeling shoot, people saw her scar. Their reaction shook her. What was her take away

“life is a recovery process.”

Where can you find Alayne:

Jan & Sarah are co founders of World Spine Outreach. A non for profit organization that has been a labor of love for 13 years. It started when Sarah, a physicians Orthopedic assistant & Jan, a head nurse of Neuro surgery in OR, traveled with hospital group.

After going on a trip of 14 days, with 7 days of surgery’s they felt the need to have to do more. In 2008, they streamlined this idea & applied for 501c3.

Searching for a group to partner with, they came across the Butterfly foundation. Butterfly foundation is a small group who’s focus was in Dominican Republic.

After teaming up the Butterfly foundation, they saw the lack of equipment as well as education in DR. Jan & Sarah started to focus on teaching. They along with the surgeons taught the residents to sterilize & how to sew, among other things.

Since then they along their team have performed 600-700 surgeries.

Butterly project loved what was happening, that they asked Sarah, Jan & team to come to Vietnam. They would travel to Vietnam for about 5 years. The came across the same challenges in Vietnam, with lack of education, funding…..

Word got around. They were asked to visit China. They went to Poland. During one of their trips, Jan met world renowned Dr. Lenke.

They have worked on a very tight budget. The volunteers have given time as well as & paid their way. Instrumentation companies have donated equipment .5 - 2 million dollars worth of instruments.

1 surgery will often taken at least 8 hours. Candidate’s are screened. This is limiting with how many patients the team can take on. Sometimes they will have 75 patients, 25 of which will only be seen.

These are often cases where they don’t have any prior screening, there is no care. Sometimes the girls are outcasts, with their families pushing them the side. They also more cases with males, unlike the states.

Sarah & Jan share a story of young boy who wasn’t in pain & yet he almost died from Scoliosis.

Other stories are of children they met with curves of 110 degrees. With 110 degree curve the children are smiling. “It’s like they won the lottery.”

During one their first trips, they realized they didn’t have any pain medication for the patients, not even Tylenol.

The patients are home after 2/3 days post surgery. Recently Sarah & Jan got to see the patients at a reunion. They track patients post surgery but with language & internet limits makes communication challenging.

In order to volunteer, you must have a purpose to serve. Example, they need help with interruptors.

The World Spine team is a team of passionate people who give the time from across the country.

For more on how to listen, listen to their story. 

Where can you find them?

Dr. Mandy was brought on the scoliosis journey through her twin daughters & how they moved differently while playing on the swings. She would find out that her daughter was born with congenital Scoliosis.

During Dr Mandy’s schooling, there was training for Scoliosis but “not in the way it’s needed when managing this. They teach you the baseline.”

She has increased her training, allowing patients to have a very specific 3 dimensional over corrective brace.

She shares when she patients have scoliosis, they aren’t candidates for a brace, what are the next steps to be taken without having wait & see. Dr. Mandy’s method is delivered through what can be done at home. This can help to prevent progression increasing mobility in the spine helping to keep the nerves healthy.

Everyone’s cases are different, so it’s important to start with a provider & take it from there. She shares that with the proper implementation, she has corrected curves.

A few keys notes: early detection, using not just one implementation.

With utilizing her resources, Dr. Mandy’s was still limited. She flew to a chiropractic group based in Idaho where she & her daughter were introduced to the owner of Scolibrace. Using a Scolibrace for her daughter, she thought I don’t need this for my clinic. Word got out & her journey turned.

Families were coming as a last resort. Sometimes it was too late. Families would see orthopedics, some of who gave patients very black & white responses.

This is where Dr Mandy’s approach is different. Everyone is impacting by this diagnosis “so let’s deal with this as a whole, so that you can manage this.”

Her hope she wishes someone would never come to her & say, “I wish I would have known.”

Having one of her daughter’s be diagnosed, she never thought she would be on this journey 10 years later.

For more of her journey providing for the Scoliosis community listen to her episode.

Where can you find Dr. Mandy Dietz?

Diagnosed at age 11 after shooting up in height. Tina grew up in Buffalo where winters were cold. Wearing baggy clothes kept her curves hidden until she was screened by the school nurse. From there, she went to an orthopedic where she would be fitted for a brace. Being a type A, she was very disciplined. Wearing the brace temporarily helped stop her progressions.

With this, she experienced the psychological aspects of wearing a brace.

Her curve continued to increase resulting in being fitted for multiple braces. At age 16, her orthopedic said she could take her brace off.

She moved, feeling a sense of new freedom. Her curve at this point was in the 50’s. Not being in pain, her curve wasn’t impacting her organs, her orthopedic did not recommend surgery.

Looking back, she shares that she pushed this under the rug, ignoring it.

At 18, she went to NYU. Focused on school & her passion for music. She put her Scoliosis in the back of her mind.

It wasn’t until she started going on tour at age 20 that her pain started. She practiced Schroth. Got her yearly x-ray’s, seeing that her curve had not increased. After a while, she found that therapy wasn’t enough. At 31, her curves increased.

With an 88 degree curve, she decided with the support of her husband that surgery was her next step. Doing her research, she found a surgeon that was the right fit. 5 weeks later, she would be scheduled for surgery. “I had to do something about it before it was too late to do something about.”

“I had to face reality at this point. In my early 20’s, I didn’t want to face it. In my mid 20’s, I accepted it, taking action, PT, Schroth, working out…. In my late 20’s, something didn’t feel right.”

Post surgery she gained 4 inches in height, literally giving her a new perspective. There were however some complications, one of her lungs had collapsed. Fluid had built along her spine. Recovery took longer than anticipated. 

One thing she discovered - how much her lungs had expanded. “The act of singing isn’t as physically as intense.”

Given the changes & complications she endured, “I would do it all again today!” After a few months, she was reminded why she took on this journey. “I feel the inner strength. I feel strong! I can strengthen. I can have a body that I don’t remember having.”

“Everything is balanced”

As a result, she has written a song, I AM A FIGHTER, to be released June 3rd.

What is she looking forward to now?

Where can you find Tina:

Let's Dive in!

Sarah- born with Scoliosis, feeling limited, never interested in sports. In her mid 40’s she became interested in exercise. Through her journey, she learned about how unlimited she has been.Trying a little bit at time, she discovered she’s able to do almost everything. One day while out with her dogs in the woods, she picked up a stick & started moving it. After finding that it felt good, she made a 4 lb Gada. She currently swings 15lb. What she likes about the mace, “it’s stable. My whole body is working to keeping me upright, controlling the weight. It’s not just arms, it’s my whole core.”

Kay- growing up playing sports. At 18 he started going to the gym, lifting heavy. At 25, his hip started hurting, causing him to start limping. He started to deteriorate without being diagnosed. Eventually he went to the hospital. Eventually he was diagnosed with Scoliosis. He would later find out his neck was broken. Doctors surprised, telling him, you should be dead! Kay’s discipline of going to the gym, is what kept him alive.

Eventually having surgery, resulting in not being able to rotate. Continuing with traditional workouts, he was still in pain. He researched & found “rotational movement training” & Rik Brown. Kay started training with the mace & clubs. Using these modalities, he has put on weight, gaining strength. He now has a collection of mace’s & clubs.

Clea- diagnosed with Scoliosis at 12. She was fused at 14. Not being very athletic,  he never liked running. She always tried to do some exercise, “to stay fit” but having Scoliosis she had ups & downs. During the pandemic, she found TOPS (Twisted Outreach Program). 

Being a cello player, she’s sensitive about her shoulders and arms. “What If I tweak them? I won’t be able to play.”

Trying a few exercises with a broom from the membership portal, she saw that she could safely do them. She invested in a mace. For the 1st time, she has a daily exercise routine. She currently switches between the 5 & 7 lb mace. Before training with a mace, she “used to be closed up.” Her training has helped with her pain, increasing her strength & range of motion. 

Emily- In high school, she played field hockey. Complaining about her back, she was diagnosed with Scoliosis. After having a growth spurt, her curves were at 40/50 degrees. This would result in surgery.

Post surgery, it was recommended that she work with a personal trainer. Someone who has a background in ballet/pilates.

It was through her friend that she was able to find that match.

While not having access to a mace, she substituted it with a Didgeridoo. One of the first things she found while working with a mace substitute, “it’s fun! A lot of the moves are strengthening while stretching. This results in instant feedback of something that is feeling good to my body.”

On a final note, they share advise when starting with a mace

The weight of the mace is shockingly less than what you think you would use. Go slow learning & do not push yourself too hard too fast. 

Leave your ego at the door

Have fun with it! Don't feel limited by what you think you can do

It's worth it to commit, even if it's not a long practice

Don't underestimate the mace, it's more a holistic practice. See where it will take you

Where can you find on Instagram: 

Born with her “right up against her right shin.” For the first 6 weeks of her life, she had physical therapy. Which “released” the stress in her foot.

Her adoptive parents having no prior knowledge of this, Ann would not find out until meeting her birth parents at age 17.

Ann believes that her journey with Scoliosis started from the nerve pain she had on her foot. As a child, she was pretty twisted. In her mid 20’s, she moved to California where she started to see a chiropractor. It was at this point she found out she had Scoliosis who told her she would always have to go to a chiropractor.

In her late 30’s she discovered EFT (Emotional Freedom Technique) a “tapping method.” She used this method to dive further into her traumas resulting in her becoming calm & quiet. Continuing with this, she learned that every emotion has a sensation. Focusing on these points, she was able to “let go” & the thought became “free.”

At some point during this journey, she found she could keep her awareness inside her body after the tension had released.

One day she was working on release tension in her abdominal area a place that felt like a black hole. She put her awareness on it, discovering the tension in her connective tissue from the right leg across her body up to her left cheek. What she discovered was that the “tension” was from the first 6 weeks of life.

How does this relate to her journey with Scoliosis? She believes that it started with her foot. She could feel the tension, pulling her hip down out of alignment. The connective tissue as Ann see’s it is what pulled her spine out of alignment. At the age of 55, she grew 1/2“.

Ann shares what it is to release tension, what it feels like & how she practices on a consistent basis.

How has her life changed through this? “It’s a lightning of the burden.”

Where can you find Ann?

It’s been 5 years when starting with the mace. I’m not gonna lie, when I first started it was intimidating.

Having spinal limitation’s were definite causes for concern. I tried it on to see what I capable of.

One thing the mace has taught, is patience. To be present. It demands the action of firing your abdominal muscles. Having the philosophy our abs are a seed & from there we grow, is the primary foundation of working with the mace.

Our community of being fused & training with a mace is growing. People, now friends, started with a branch. They are now swinging 15lbs. They have muscle definition, their range of motion has increased. They have a good time as we watch each other grow.

Do you follow Teresa on Instagram yet? Head over to T3Fitt on Instagram and follow her and her team for additional content.

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It’s been 5 years when starting with the mace. I’m not gonna lie, when I first started it was intimidating.

Having spinal limitation’s were definite causes for concern. I tried it on to see what I capable of.

One thing the mace has taught, is patience. To be present. It demands the action of firing your abdominal muscles. Having the philosophy our abs are a seed & from there we grow, is the primary foundation of working with the mace.

Our community of being fused & training with a mace is growing. People, now friends, started with a branch. They are now swinging 15lbs. They have muscle definition, their range of motion has increased. They have a good time as we watch each other grow.

Carrie was inspired by my story she heard on a podcast. At the age of 14, Carries Scoliosis was discovered by her teacher. Dancing without any pain, she was able to do everything but when it was discovered is when her insecurities started flooding in, feeling more limited.

Her Scoliosis progressed. In class while doing a center split, her teacher looked at spine & said “not straight.”

Looking at her x ray, she had a “gentle c curve” of 20 degrees. She went to an orthopedic. They presented her with a fused skeletal spine & said you need surgery, here’s what’s going to happen.

She immediately when for a second opinion. Taking control of their decisions, her mom told the ortho, this is my daughter’s she’s going to be a ballerina, she has Scoliosis, what can you do for us? Her orthopedic saw her flexibility & stayed with “let’s wait & see. Keep doing what you’re doing.”

She continued with her passion for dance until she went to college. Around this time, her pain increased. She tried rolfing, a therapy bed which helped. She felt like it was straightening her out, whether that was a placebo affect, she believed in it. She found a movement therapist. She focused on her core strengthening along with mirroring movement. Having to make the decision of continuing to dance while in college.

As she continued to dance in college, she notice it wasn’t as much. She felt “less stressed & more happy.”

Her curves progressed from 30 to 60 degrees. It was decided that she would have surgery. The date would be Sept 25, 2019. She was in the hospital for a week. She was fused from T9-L3. Being safe in the hospital was nice but it was time to go home. Her mother, a RN was her angel, helping her off pain meds. Carrie shared that the pain was so bad, “I sat on the edge of my bed weeping.” Her mom shared the pain, they wept together.

How is life now?

Where can you find Carrie?

Diagnosed in her mid 40’s because of pain in her hip. After going to the doctor, they said her hip looks fine but “I think there is something wrong with your back. I think it’s Scoliosis.” Unsure what she should do, her doctor recommended going for pain management. She have nerve ablation, cortisone shots & physical therapy. It wasn’t until she had gone to the surgeon when she found out she had a 32 degree.

It took 2 years before she could even be cleared for surgery.

On Aug 1, 2016 she would have surgery. In 8 months her curve went from a 32 to 42 degrees. At age 51 she would have surgery. Post surgery, she was given a “turtle shell” (also known as, TLSO brace that she would wear for 12 weeks, 24/7 except for when she was lying down. She would require a tremendous amount of help from her husband. She was in the hospital for 2 weeks, 1 in hospital, 1 in rehab. Once she was home, her physical homework was to walk a mile.

Her complete recovery would last 1 1/2 year. She lives pain free, standing 10-12 hrs a day. The confidence that she carries daily, “I’m really smart about what I do.” She describes what that means to her, I ride my bike, walk a lot, swim, uses a ‘mountain climber to stay active.

Being fused into her pelvis hasn’t stopped her with 2 14” rods & 20 screws into her spine & a screw in each pelvis.

Having surgery, “gave me back my life. I gained 2 inches”

I really respect what my surgeon did for me. This gave her the freedom for her to learn what smart decisions meant.

Where can you find Lisa? 

On this episode, we welcome a very special guest, my mom. She shares her memories of what it was like when I was diagnosed, having surgery as well as when her granddaughter was diagnosed.

At the age of 10, my doctor noticed “something funny.” I was taken to the orthopedic where I was diagnosed & given a Milwaukee brace. It looked like a “torture chamber.” I had to buckle her up every day.

We went to Montauk to visit Letty’s mother who suggested getting a second opinion. Letty made an appointment with orthopedist Dr. Patrick O’Leary.

He offered a few suggestions, “do nothing, get an updated brace or have back surgery.”

Letty shares that I made the decision of wanting to wear the brace & do “the exercises.”

My curves increased. From April to May 19, they went from 46 to 50 degrees. Teresa would have 2 orthopedists performing this surgery Dr. O’Leary & Dr. Neuwirth.

Letty tells what it was like seeing her daughter after surgery. “You looked jaundice.” After leaving the hospital, Letty was told, I should wear the brace for 6 months & only walk.

Letty shares the vulnerability I had when coming home after having the “safety net” of the hospital. I rolled, learning how get dressed or undressed.

Growing taking ballet was in my bones studying at studying at ABT, Joffery Ballet & HB Studio. When July came around, I wanted to start moving again.

6 months post surgery, Letty took me to Dr. Neuwirth.

Jumping into 30+ years later. Letty talks about her memory of how she felt when her granddaughter was diagnosed. “it brought back a flood of memories. I felt like I was reliving it all over again.”

Through watching her daughter & granddaughter, she realized the strength that she carries which has been shared down to two generations.

Natalie from Kats.nats

Natalie & I connected through the organization Back to Healing.

She’s here to talk about her journey of being diagnosed to pregnancy and being the mom of two girls. Her curve was noticed during an annual school check. She was given prescriptions to go to a chiropractor, exercises, & get fitted for a brace when she was 9. She would wear her brace for 3 years.

She shares her experience of what it was like wearing a brace & how her friends would joke that she had ads of steal. Looking back, she admits it wasn’t as bad as she thought it would be. In 8th grade she went back for her check up. Her ortho said her curves had not increased. She threw the brace in the trash.

After high school. She got into a regular routine of work & school. That’s when the pain started to set in.

“I have pain every day. It’s so normal, that I don’t complain.”

She went for X-rays, to find out her curves increased to 65. She went to a chiropractor “here & there.” She went to yoga. That was something that helped because of stretching.

When she got married, insecurity set in. When she & her husband decided to have a family, she was concerned withe the strain that would be added to her Scoliosis.

She knew that she wanted to have 2 children. She got a professional opinion. They explained, “go for it, but your curves could increase.”

When she got pregnant with her first child, she didn’t even have time to think about her back though she did experience pain. For her second pregnancy, the pain increased requiring that her husband massage her back regularly.

She could tell her curves were increasing. She went back to get an x-ray only to confirm she was correct. Her curves increased to 80 degrees.

She shares how she has felt helpless. “Not that doctors are bad, but no one discussed what I should do.”

Currently her curve is at 81. She feels her curves now more than ever being a mom of two toddlers. Being active with her girls helps to subside the pain. It’s at night when she’s still that it really sets in.

Joining a gym has helped her manage the pain. She is open that sometimes she does have to limit herself because her pain can escalate.

She started on her journey of exploring her spine when she created Kats.nats with her friend to empower women. Being that her husband is a photographer, he was on board to help showing her spine in the most powerful form.

What she wants people to know, “I’ve had Scoliosis for a very long time, I still did sports. Sometimes I still get insecure.”

If she would meet someone who has been diagnosed, one things she would ask them. How did you handle your Scoliosis? Is there anything they regretted? She would like to ask someone who has lived with Scoliosis, how was it? What did they go through?

Where can you find Natalie?

Instagram:

Darlene started having back pain at age 5. At 8, she & her family noticed that she held her back pack differently then her sister.

“As soon as I put a book bag on my back, it felt weird. I didn’t feel even.”

When she was diagnosed, her curve wasn’t severe. She started a routine of exercising 2x a week with a professional but it didn’t last long.

Over time, her pain got worse from carrying books that she would use a wheeling back pack which wasn’t cool to be seen with. She would compensate by shifting her weight onto one side. She noticed the pain started to glide up her spine. She could feel the difference in her spine.

At age 15, she was fitted for a brace. After 2 years, she would stop wearing it. She found that wearing a velcro type brace, helped to keep her upright.

Being that Darlene is a fashion model, I asked how is it as a model with Scoliosis?

“I know how to hold a pose. Standing wearing heals, feeling pain in her hips, I’m able to ignore the pain.”

What she would say to someone get up every day, don’t allow yourself to be stuck. Life goes on.

Where can you find Darlene?

At age 25, he was diagnosed with ulcerative colitis. Always very fit, he started losing a lot of weight & became weak. His back started hurting. He was given pain killers to help with the pain. He went on a trip to Nigeria to help his parents business where he fainted. This would start a long journey of hospital visits. During one of those visits, he had an X-ray where his Scoliosis would be discovered. Being diagnosed with Ulcerative Colitis & Scoliosis, “these conditions nearly took my life.”

His pain worsened to the point where he couldn’t move his neck. Having another X-ray, he found out his neck was broken. “We don’t know how you’re alive,” the doctors told him. The team of professionals asked what he did, coming to the conclusion that it was his strength training that kept him alive. His training methods took him on a journey of using unconventional modalities, in particular the mace, Indian clubs & slush ropes. Using these tools, offered him new possibilities in his strength training methods. “Finding this new way of movement, helped a lot.” He found these new methods through David Weck, Rik Brown, Leo Savage. In 2019, he started working with his 1st mace. His journey continued of physical challenges, but his drive was stronger than allowing his limitations take over. Having a group of friends for support, who said you need to NOT sit down, be pro active!  “simple words can go a long way to the right ears.” “Limitation is just an opinion.” Before he started working out his pain would be at an 11. Since he’s been training with the mace, clubs & ropes, his pain levels are at a 3/10. “It’s a miracle to movement. You don’t realize how much you’ve restricted yourself to moving in straight lines.” Ola Kay is his name & what it translates to “god brings joy” is what he lives by. 

Where can you find Kay Ola 

Instagram: Kayola1185 

Resources: 

RikBrown 

David Weck 

Leo Savage 

Dr. Lonner who specializes in Tethering at Mount Sinai 

This is an episode you won’t want to miss! Dr. Lonner shares with us what Tethering (Vertebral Body Tethering/VBT or Anterior Scoliosis Correction/ASC) is & how it helps to correct Scoliosis without fusing the spine. This procedure has been around for about 10 years. Dr. Lonner has been practicing for over 20 years but has been performing the tether method for 6. He currently has just 400 cases under his belt. His success with his patients ranges from all age groups all over the world.

Candidate's for this procedure will have a 40 degree or higher curve & range from young to mature ages.

“My goal is to educate families so they can get back to their lives.”

Where can you find Dr. Lonner:

His assistant Patricia: 212.241.8312

Damian & his twin brother diagnosed at 12 with Severe Scoliosis. By the time they were in high school, they were both wearing a brace.

They would both given a brace that they were supposed to wear 24 hrs.

What they were supposed to do & did, were two very different things. When their braces arrived, they were mis matched. Damian was given Jeramine’s brace & Jermaine Damin’s. From 14-17, their orthopedist said if you don’t have surgery, your curves will only increase. Damian was already walking with elevated levels. Him & his brother would have back to back surgeries. Recovery lasted about 3 months. Before he knew it, Damian was back to running & playing basketball.

His recovery would require him to lay face down.

At the age of 21 he started working out primarily focusing on muscle gain. He reflects in hindsight that if pilates or yoga had been introduced, he would have been able to maintain some of his flexibility.

Recently Damian had hip surgery. His orthopedist at the time, mentioned that down the road his brother, not him would have arthritis & requiring a hip replacement.

He proudly says that his surgeries are his battle scars. Sharing with his clients, don’t be ashamed of your scars, wear them with honor!

I asked if he was ashamed when he was diagnosed, he wasn’t but “felt embarrassed for his mom, like I let her down.”

He currently resides in PA which requires a lot of driving. This impacts his spine, along with his recovery from his recently surgery.

Having Scoliosis doesn’t mean you shouldn’t workout, on the contrary, work out! You might notice your imbalances a little more, one pec not as developed as the other.

“The goal is to move! keep moving!

Be validated, to love yourself.

Something he always telling himself, ”if I wobble when I walk, something’s wrong.”

Do your research, “you make your chapters in your life!”

Where can you find Damian:

Welcome to the T3Fitt Scoliosis Podcast. Today we are talking with my 1st guest, Sara. It is an honor to have her as a guest on today’s episode.

Here she shares:

Her story from the emotional as well as physical journey of living with scoliosis.

What life was like in school. The emotional scars of triggers. What life was like after surgery. How she took life back.

“My Spine My Rules”

What she has learned along the way.

Where you can find Sara Instagram - sarahe3210

Related Links:

Luisa is a German born personal trainer who lives in Dubai. At age 9, her curves were found while at school. She was sent home with a letter saying she needs to see an orthopedic. Every 6 months, she would be evaluated. She was given a variety prescriptions, from needling, to physical therapy, & being fitted for a brace. This was the beginning of her journey to see what it’s like to walk alone.

No one told her how to use the brace, “wear it for 24 hours, expect for showering.” Luisa was extremely disciplined doing her exercises & wearing her brace. After wearing it for 3 years, she watched her curves increase.

Feeling very “fertig” she smashed up her brace & threw it in the bin.

She became so depressed falling into a tunnel not just psychology but physically. The pain she endured was so much that she wanted to end her life. Eventually she found the courage to tell her parents & researched places for surgery. She found Schoen Klinik in Luebeck. In her last X-ray, prior to just prior to surgery, it was discovered that she only had 4 lumbar vertebrae.

She was scheduled to have surgery with a few options given allowing her to have spinal mobility. Along the way, there would be a few problems. One of them was they woke her up during the surgery to make sure there wasn’t any nerve damage down her legs. “I had to move my legs hard, not just my toes.” It felt like a dream but her file proved it wasn’t.

Post surgery, she couldn’t walk, she was throwing up. She found ways to have a positive mindset. She had so many questions & no one could give her answers.

“I lost a lot of my childhood with Scoliosis & living with a brace, wearing baggy/boys pants classmates being mean, throwing food & stones at me.”

Jumping forward, Luisa tells us how she became a trainer. With the process & requirements that Germany requires on what type of work you can do, she was limited.

It took her 6 years to find that she could do a sit up!

For the past 2 years, she hasn’t needed to take ANY medication! She is now mostly pain free.

“it’s from day to day that you notice the little things that you are able to do differently.”

Where can you find Luisa:

Diagnosed in the 5th grade, she was referred to an orthopedic with an 11 degree curve. With her curves, & her mother having Scoliosis, they were met with a casual attitude.
Not thinking much about her Scoliosis, she was asked by her boyfriend at the time, what’s wrong with you collar bone?
It was during this time, she was in school to become a physical therapist. “They didn’t really teach much about Scoliosis.”
There was a gaping whole in her ability to treat people. After having an accident that kept her in pain for three years, questioning her ability to continue as a PT. She started practicing the BSPTS Schroth method. Her pain, subsided. She was moving better.
It has since become her passion & excitement being able to use it with children as well as adults.
She talks about the differences she has learned from working with children & adults.
One thing, she shares as an adult, “pain makes you really grumpy.”
“Adults need more hope. This isn’t a quick fix.”
She hopes that when someone sees an individual with Scoliosis working that it will allow that individual to rethink how they can move.
What she hopes people take away, “you’re unlimited in where you go, you just have to push yourself there.”

Where can you find Dr Sarah?

Instagram: Kinetic.studio.pt

web: www.kineticstudiopt.com/

Diagnosed at age 11. Her Scoliosis was discovered by her ballet teacher. She went to a chiropractor who gave her a few exercises & took some images only to find out that the first set of images, the cobb angel wasn’t measured correctly.

From there she went to an orthopedic only being given the choices of “wait & see” or get fitted for a brace. If she decided to move forward with surgery, her orthopedic would suggest a “selective thoracic fusion.” With research, she found that Idaho only offered surgery using Herrington rods, where as California used a new CD method, known as the Cotrel Dubousset method “the cages.” At age 12, she would have surgery. She later found out that she would require a bone graph which required a separate incision.

As a dancer in her pre surgery living, there was no pain. Post surgery she was in a brace 6 months. She doesn’t remember feeling her limitations which was due to her hyper mobility. By the time she was in high school is when the pain started.

It’s been 30+ years since her surgery. The way she moves has changed significantly. She has a variety of routines that she uses to keep herself out of pain. Some of those include, walking, hiking, skiing.

A final thought she shares with us:

Continue to explore your journey with Scoliosis as your body changes. Continue to move & don’t sweat the small stuff.

I wasn’t given a lot of limitations. I had to find them.

Where can you find Jen?

Instagram: scoliosisandbackcare

Lou & I connected at a birthday party of a mutual friend. When I found out she has Scoliosis, i I knew she had to come on the show.

Here is Lou’s story.

In 9th grade when she & her sister were getting ready for track. Her sister came up behind her “what’s wrong with your back?!” asking as a teenager sister would in front of everyone.

She went to an orthopedic & chiropractor being filled with “false promises.” She remembers the love hate relationships between those professionals.

She noticed that as a kid she shifted her weight to one side. Her mom would say you stand like a chicken!
“I didn’t want to be that kid who showed weakness.” After time what she realized was her body wasn’t showing weakness, it’s just how she was & is.

Not being comfortable to have surgery, she made the decision to stick with the chiropractor.

After being aligned, she felt great but quickly found out that it was just a “placebo affect.”

Knowing she always had a passion for muscle definition she loved seeing how strong bodies could become.  Her father got a membership & asked if she wanted to be his gym buddy.

When she started competing, she found the tricks on how to cover her curves. Place the hair perfectly to hide her curves. As she progressed, posing would change, showing her back not having her hair in the way. “That scared me.” The judges loved her, but there was her back.

In Belgium, things were a little different. She hired a posing coach who taught her stand.

She’s not just a competitor, she’s also a power lifter.

What her curves have taught her, wear you hair up, wear that open back shirt. Some professional body builders who have inspired Sydney Gillian & Lamar Grant.

While she loves body building, she openly discusses that there is no one size fits all.

Where can you find Lou:

Anthony & I connected during a workshop of training with the mace. Shortly after, he shared that he has scoliosis.

This is his story. in 2014, while working at a prison, in NJ he was putting out a fire. As a result of the fire, he would have chest X-rays for smoke inhalation. During this, the nurse noticed his curve. At age 31 he would be diagnosed with Scoliosis.

He discussed this with his PT. Going to different doctors, he would get different assessments saying his curves were not of the same degrees.

Looking back, he had pain in his left side. Since then his training has evolved. He’s training smarter, educating himself & using different modalities

He started working with a mace. He liked the mace because of the various planes of motion, as well as it helping his shoulder. Emphasizing it’s essential to train smart when using the mace.

He shares how he started getting into the mace, because of it’s “deep functional training.”

He started heavy with his first mace. He quickly learned that mace training isn’t about the weight.

Since working with the mace, he his mobility has increased.

where can find Anthony:

Today’s episode shares the perspective of being a dad and what it was like when his daughter was diagnosed with Scoliosis.

At the age of 6, her scoliosis was discovered by her gymnastics teacher. Not having any prior experience with Scoliosis, he felt like he was in a tunnel, “pressing the panic button.”

Not knowing how to deal with it, he looked online only to see the worst of images. 

He felt bad not just as being her father but being a trainer & not noticing it.

As a teenager his daughter would have a custom brace. She was required to wear it 16 hrs a day.

“It was a mission to get her brace on.”

He shares with us that when his daughter didn’t wear her brace, her back started to hurt.

He trains her 3x a week, emphasizing the importance of communicating with her team of specialists.

Having the team that they have created has been essential. 

Where can you find Carlos:

www.theoleonhouse.com/

Related Links:

Born with a congenital heart defect. Her Scoliosis was found through her cardiologist at the age of 8. She was closely monitored & by middle school she wound up wearing the Boston brace but making the decision not to wear it every day. She also discovered “hellerwork” a deep tissue massage in the hopes that it would make her scoliosis go away. No one recommended any type of PT.

In ’98 she had surgery. She blocked a lot of that time out, she does however share what she remembers. She wasn’t in pain prior to having surgery. “It took time getting used to her new body.”

It’s taken a while to figure out what is the answer for her new body. What she thought her body would be like post surgery. Learning to live with a fused spine has been challenging.

It wasn’t until being pregnant that gave her the opportunity to find the Scoliosis Community.

She shares how she has learned to take care of herself, getting massages & finding a program with a coach who is fused like herself.

“Once I started working patiently with a mace, I realized it didn’t hurt my back.”

My arms can go above my head since working with the mace which they hadn’t been able to do previously. I have shoulder definition for the first time.

Where can you find Clea?

Was first introduced to Scoliosis through her sister who was diagnosed. Angele’s curves started at the age of 10 with a 60 & 55 curves. At age 14 she would be wearing a brace for the next 5 years but wasn’t very good at it. She would use any excuse to take it off.

She did not live in pain while her curves increased. 18 years later, she made the choice to have surgery.

What she focuses on in her daily life, learning how to live in her new body, how to manage pain & sometimes sharing some of her most private things through social media.

Having had her surgery in France, she remembers what her biggest fear was, how long she was in the hospital & her concerns about coming back to the States.

She shares what she anticipated on how she thought she would be post surgery.

What life is like now, what is her new normal.

Along the way, she’s learned “being very kind to myself mentally & physically.”

She shares the WHY of choosing to have surgery

"What do I want to do today vs what am I expected to do today?”

Where can you find Angele:

Instagram: LivingwithScoliosis

Related Links:

Diagnosed at age 11 with 72 & 54 curves that were first discovered during a routine visit to her dentist. 

She was sent to Shriners Hospital. Through testing, it was discovered she had a heart condition which she would also have to have surgery for.

Her first spinal surgery would be January 11th, lasting 14hr & was performed as an anterior fusion.

The surgery was so aggressive that her body reacted with her getting her first period & her lungs filled with fluid

Those surgeries were the gift that would set her up for her future scoliosis surgery.

At 17 she had her second surgery where she then took off!

She started working with a personal trainer, focusing on abdominal & strength training.

Over time, her body would started to “fall apart.” Having trouble with her pelvis, her leg would sometimes go numb.

She found Dr. Schwab head of orthopedics at the Hospital for Special Surgery. He along with a team, would reconstruct her body, fusing her sacrum, relocating her trunk.

My body didn’t understand straight, my body didn’t understand being a little softer.

Not having pain for decades can be very traumatizing.

Body dysmorphia is still very much a part to her life. Where is she now?

Where can you find Denise:

Her story started at 13 & has continued to today at the age of 36 with multiple surgeries along the way.

She’s lived through pain, while discovering her strengths along the way & just how resistant she is.

She discuss her first brace fitting of being rapped in plaster & have it be sawed off to her updated 3D current brace.

She curves started in the high 50’s & low 40’s & would progress into the 60’s.

She would have hardware taken out before she was even fused.

Being told that “Yoga is hokis pokis” there was no pilates to help.

After a year post surgery & being in pain, she would return to have hardware taken out. She started to notice that her body was twisted.

Not being able to attend her high school graduation because the school was not ‘handicapped friendly’ friendly.

After 1 of many surgeries, she was pain free able attend college, having the best time. She was working out, running….

I felt like i had my life back.

Finding a doctor who held her hand, who was humble.

She was struggling with her spine, to the point that she started to fall forward.

Having her last surgery in NY during covid, going home, she fell down the stairs.

Her surgeries were complex but her determination is fierce.

Where can you find Whitney:

What it’s like training with a mace & being fused Sara, a former podcast guest & I talk about what it feels like being fused & training with a mace. Sara shares having a rotator cuff problem & how training with a mace has helped. We share our experiences of dancing with a mace from training with a mace, to not being coordinated. Sara talks about making a gada (the original mace) Training with a mace, doesn’t require you to start training with a mace. Some of the benefits of training with a mace: *Increasing balance *increasing stability *Increases strength *increases trunk strength *mace training isn’t about the load *if you love to dance you’ll love the mace 

Resources: 

Her story starts in the 5th grade

The first joke she encountered was told she had “Schooliosis”

In middle school she met with her orthopedic who introduced her to the thought of wearing a brace & what that would entail. Not just the physical but the emotional challenges that can come along with bracing.

Choosing not to brace, appreciating that she had that choice because she knows not everyone does.

The pain she endured & progressed during 8 & 9 grade. What it was like going to church & sitting in the pews.

During this time, there was so much to take in that PT wasn’t a real conversation until post surgery.

She was told as you grow so does your curve. She had stopped growing but her curve didn’t.

With a 45 curve, she would be fused.

As a high school senior with a 45 degree curve, she had surgery.

Having surgery in Texas living her every day life, she didn’t feel pain until coming to NYC & experiencing the cold vacuum like winds & icy streets.

How was life different post surgery? I can’t get into anyone’s mind expect my own.

Post surgery helped solidify her new chapter of friends.

What she was told she could & couldn’t do? Wondering "Is their a single source of truth to this.”

What she does for herself.

Finding the beauty that you have.

Celebrate your difference.

A phrase she keeps close: Wabbi Sabi, Embrace your flaws.

Where can you find Simone?

On this Episode we welcome Allie, a scoliosis surgery pilates teacher

She shares her story of being diagnosed at 13 with 43/40 degrees & no pain

Going to Emery spine center in Georgia & being a ginny pig for an experimental brace.

After wearing the brace for 3 months, her curves increased to 52/48

In 2007 she when she was a high school freshman, she found out she would need surgery.

In May she was diagnosed by December she was already fused being in the hospital for only 4 days!

Bringing a pillow to school was necessary because sitting on school chairs was too painful.

She has only recently started to process the whirl wind of what happened.

This December will be her 14 year mark of being fused. She shares what 14 years post surgery has been like & what she has learned.

Acceptance.

It’s not your fault

Take this one day at a time

Allow yourself to feel the feelings, all of them.

How she turned to fitness and what it has done for her

What makes her different, she lives with a fused spine making her relatable to spinal fused clients.

Lastly here are a few take aways she shares:

Give yourself grace

Understand that things will be different

Celebrate those differences

Where can you find Allie?

On this episode we welcome, Faye Viviana a former professional ABT dancer.

She shares her journey from being diagnosed with Scoliosis, to being in blinded in pain.

At 16 she was being told she would need surgery & what that was like being with ABT in NYC

When I was dancing I wasn’t in pain. When I wore my brace at night the pain set in.

Landing from a jump, I would go blind from pain

Partnering in dance & the frustrations that came along with it.

How costume fitting had to be tailored to her specifically.

Feeling that her back made other peoples lives harder.

What it was like when she met Wendy Whelan.

The feelings that came along with being faced to look at her back every day.

Finding that Feldenkrais was the quickest quick fix.

How she was able to hold her curves. Finding herself in a dark place thinking about how she could magically fix her back.

It's Scoliosis awareness month. On this episode we welcome,  Jamie the SlayCoach. 

Here are just a few things this fire ball shares with us:

Being diagnosed at age 10

Being punched in the stomach with abs of steel & flat butt

At 15 with a 36 degree curve she was told you’re done growing, you can stop wearing the brace.

After she stopped wearing her brace, she experienced pain, breathing became hard

“I felt uncomfortable in my bones”

Her curves went from 36 to 57 in a few months.

Having the support of friends to help bathe.

One of biggest points she morns is it's harder to stretch

“I’ve never stopped missing being able to bend backwards.”

She started working out to impress a guy who became her future husband, discovering that finding functional exercises gave her freedom.

The only time it hurts is when I jump back into exercise after having time off.

Having a daughter be born with infantile Scoliosis & what that meant.

Where can you find Jamie?

On this episode, we welcome Michelle Shipirao, a Holistic Registered Dietitian 

She shares everything from nutrition, to gut health, to elevating anxiety which can play a role in our tension with curves.

Michelle tell us what it means to be a Holistic Registered Dietitian.

She talks about functional nutrition. 

The root cause. 

What are the reasons for your symptoms & whole body nutrition.

Our bodies are messengers.

She’s a believer of body neutrality which means I may not love this right now but I can accept how I feel at this moment. This can automatically reduce our pain & anxiety

What type of foods that can create bloating

Why it’s important at the speed in which we eat.

Two key points to look at with food & scoliosis, do you have inflammation, are you boated?

A reference point she suggests is fodmap

you have the power to make change

Bonus: What she thinks about the air fryer & a secret she shares with us on using it

Where can you find Michelle:

He extraordinary story in a nutshell. Here are just a few things he shares with us.

He first recognized something wasn’t right at the age of 7 but was told, it’s nothing you’re a boy.

At 13 he had his first back spasm which shut his body down which then opened his parents eyes that something was wrong.

He drove to the nearest hospital, an hour away where he sat & waited for 3/4 hours to be seen.

When he was seen the doctor said you’re harder here then there, one angle wing is popping out but not the other. I can give you a shot but the pain came back

From there, life changed. He traded in hanging out with his friends to being in pain & going to the hospital weekly for general physical therapy.

After 2 1/2 years, he finally got first X-ray. 6 months later, he would see a scoliosis specialist.

Every 6 months going for an X-ray & having to wait 6 months to discuss the X-ray. Being told the same thing.

Surgery was discussed giving him a 50/50 chance of getting rid of pain with a 100% of not being able to move his neck.

His dreams were shattered.

“Don’t lift anything over 1 kilo (2.25lb)”

You can’t do this job. Your weight is a problem….

Having no support, his life spiraled from one substance abuse to another.

It wasn’t until he became open, listening to the potential that someone saw in him that things started to change.

Since then, “I have become a helping hand.”

I would not become this person if it wasn’t for my back”

Where can you find Shano

Emily from Build & breathe pilates based in the UK

Here are a few things Emily shares about her story & the clients she has met along the way.

Diagnosed at 14 & immediately put onto the waiting list for surgery. She had a spinal fusion from T4-L5. Post surgery she was left to her own devices.

For the first 5-6 years her struggle with pain was daily.

*On her spinal fusion journey, she discovered one of things she considered’s best part.

*What she since learned is about is the emotional recovery and what that means.

*She talks about the emotional components while living in the UK & what that comes with.

*Surgery isn’t the be to end all & that was part of the struggle.

*The emotional acceptance is long term.

*The commonalities she shares with her clients.

*Organizations she works with outside of the scoliosis community.

“Counseling needs to be added to the process.”

Where you can Emily: