Chalela Physical Therapy Institute for EDS and CCI/Cervical Instability

Having EDS means your body works differently. 

Shouldn’t your physical therapy work differently too?

At the Chalela Physical Therapy Institute, we approach physical therapy through the lens of neuroplasticity – the brain’s ability to adapt and change throughout life. Using biofeedback, our protocol retrains the brain, allowing our patients to improve faulty proprioception, strengthen deep stabilizers, and learn proper physical alignment.

As patients work with us, they learn to protect not only their joints and ligaments but their neurological and vascular systems as well, leading to improvements in their pain levels, neurological symptoms, and overall functioning.

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Physical Therapy

We offer in-person physical therapy at our location on Daniel Island, South Carolina. We specialize in treating EDS & CCI for patients all over the world, but also see local patients who need classic physical therapy.
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Telehealth

Susan offers wellness treatments and health management consultations for EDS & CCI patients who are not able to travel to come see us in person.
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Frequently Asked Questions

Traditional physical therapy can not only be unhelpful to patients with EDS, it can actually be harmful due to weak collagen and comorbid conditions. First and foremost, our approach takes into consideration the myriad of ways that EDS can affect your body’s biomechanics. As you learn how to stay in proper alignment, you will be able to function day to day with less pain and other symptoms. We teach this alignment using biofeedback to correct faulty proprioception caused by EDS, strengthen deep stabilizers to act in place of loose ligaments, and avoid extreme ranges of motion to prevent further damage to ligaments.

For in person treatment, we accept many types of insurance as well as self-pay. Telehealth services are cash pay only to allow us to treat patients regardless of location.

If you are coming in-person, but are not planning to attend regular PT at our clinic, and just need a small number of consultation visits for guidance on EDS or CCI, you will be considered self-pay. Insurance can only be billed for in-person visits if you are consistently coming to the clinic for physical therapy. We cannot provide superbills or any codes for these visits, as they are considered consultations and not physical therapy.

If you would like to know if we accept your insurance, please text or call us at 843-364-3213. If you would like to get on our waitlist, please complete the form on the “Get on the Waitlist” tab.

Our waitlist is several months long. Though it is difficult to give an exact length of time, we are working as hard as we can to provide such essential therapy to as many patients as possible. Head to the “Get on the Waitlist” tab to reserve your spot on the waitlist!

We do have cancellations that occur, and we try our best to get new patients in off of cancellations as well, this may significantly shorten your wait time. Please be aware that due to the volume of patients that are waiting to see us for therapy, we have a very strict cancellation policy.

There are a few major differences between telehealth and in-person appointments. The first is that telehealth can be done from anywhere, so you do not need to be local to Charleston or travel to our office. We can even do telehealth with patients in other countries. Because we want to provide telehealth appointments regardless of location, these appointments are cash pay only, whereas we do accept limited insurances for in-person appointments. The treatment protocol is identical between in person and telehealth appointments, with two exceptions – the first is that telehealth does not allow for any hands on or soft-tissue work by our providers and the second is that you will need to have your own equipment to complete your exercises.

Our clinic has an equipment list that can be easily ordered online for your personal use at home, to keep up with what you have learned at therapy in-between appointments or during telehealth visits. Once you are a patient and you have learned how to use the equipment, you will be given access to the list for you to order.

Cranio-cervical instability ranges in severity from mild functional disability to life-threatening instability, and the path of treatment is determined in part by the level of symptom severity. Some cases of CCI require surgery to fuse the skull to the top of the spine to eliminate the instability that causes injury to the brainstem. This surgery has a difficult recovery, with possible but rare complications of hardware failure and a new onset of instability in the joints adjacent to the fusion. For patients who require this surgery, it can relieve many symptoms and improve their quality of life, but for most cases of CCI, our specialized physical therapy can provide the same relief without the risk of complications. As a result, many neurosurgeons require the majority of their CCI patients to try PT for a period of time before agreeing to a fusion. In our clinic, we have had great success in preventing the need for cranio-cervical fusions, and for those who have required fusions, PT can help prevent adjacent segmental instability from occurring. Our approach requires you to commit to working the protocol, completing your exercises between sessions, and giving your neck the time it requires to strengthen, so we encourage you to come in with a positive attitude and a willingness to be patient for the results and do your homework in-between sessions!

Every patient is different, and we tailor our treatment to what each patient requires. Most of our patients come 2-3 times a week at first, with a gradual tapering as they gain strength and knowledge of how to continue this work at home. Some patients traveling from out of town will complete a single session to a few sessions with us consecutively while they are in-town and continue on their own or via telehealth.
We understand life happens and appointments need to be canceled or rescheduled! We do also have a long waitlist and want to ensure as many patients as possible are able to be seen. As such, we have a very strict cancellation policy, but are always understanding of emergencies and illnesses. If you need to cancel an appointment, please text us as soon as possible at 843-364-3213 and let us know your reason for cancellation.
    • If you need to make any changes to your appointment within one week of the scheduled time, there is a $10 fee. 
    • If you need to change or cancel your appointment within 48 hours, there is a $50 fee.
  • Cancellations or no-shows made within 24 hours of your appointment will incur a $125 fee.

 

Traditional hands-on therapy can be harmful to EDS patients due to weak collagen and the unique nature of the condition. The hallmark of hEDS is laxity in the ligaments that are meant to stabilize joints correctly. Because these ligaments are too loose, the secondary stabilizers – muscles – are often in spasm in an attempt to stabilize hypermobile joints. Traditional PT would use hands-on techniques to reduce the spasm, but unless something else is stabilizing those joints, doing so can cause further injury to ligaments – and, especially in cases of the spine, potential damage to the nervous system. Because of this, we focus first on strengthening the deepest levels of muscle to help maintain proper alignment of the joints with limited hands on work. When we do hands-on work, it is with the knowledge and expertise to do so safely. We find this approach to be successful in long-term pain reduction and in the reduction of other symptoms while protecting joints from further damage.
During the first appointment, we will be completing a full evaluation – looking at your medical and surgical history, your current level of functioning, the impact your conditions are having on your life, and the severity of your hypermobility. From there, we start working from the ground-up…literally. Even if your chief complaint is your head, we start our work at the feet as every level of alignment is affected by the levels below it. It is impossible to attain proper cervical alignment if your back isn’t in proper alignment which can be caused by your pelvis being out of proper alignment which can be caused by your knees being out of proper alignment…and so on. At this appointment, we will begin the process of determining what outside supports (orthotics, braces, etc.) will aid in our work together. From there, we will work with you to outline your treatment goals so we can get to work! If you plan on using insurance to pay for your therapy, much of your initial evaluation will be geared toward questions insurance requires us to ask in order to approve and cover you for treatment. If you plan on coming in-person regularly, that is fine! However, if you are just in town for a limited period of time and want to maximize your initial evaluation before you transition to telehealth, or just as a one-off, we recommend using self-pay and forgoing insurance for your appointment.
EDS and CCI are both medical conditions that require a physician to officially diagnose, so we are not able to provide an official diagnosis through our work with you, though we can often help point you in the right direction for who to see to obtain a diagnosis. For an EDS diagnosis, we recommend seeing a geneticist who can test for the known EDS genes and clinically diagnose those types without known genes, like hypermobile EDS. For a CCI evaluation, we recommend seeing a knowledgeable neurosurgeon who will order the type of imagining needed for diagnosis. Both of these diagnosis journeys can take time, and since physical therapy is often the recommended first line of treatment for both, we encourage you to start working with us while you go through that process.

We are a specialty practice that only sees patients who have either EDS or CCI, or are hypermobile and need PT for hypermobility-related concerns. If you are in need of regular PT and do not have any of these conditions, please talk to your doctor about where they recommend you recieve treatment for your physical therapy needs.

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What People Are Saying About Chalela PTI

I had been doing physical therapy with other PTs for over a year before being referred to Susan. Every other PT had only made my condition worse. Susan, on the other hand, has already helped me so much in such a short time. Many PTs try to fix your posture by overcorrecting in the opposite direction. I can tell you first hand that this can cause many problems. Susan has a very different approach. She teaches you to align your body exactly where it should be. Learning the 5 blocks of balance on my first day has made the biggest difference. The five blocks of balance include: making sure your weight is equally distributed across both your feet, your knees are balanced but not locked, your pelvis is in neutral position, your shoulders are in neutral position and lowered, and your head is balanced above your shoulders. Susan has been awesome to work with and I really look forward to continuing my progress with her!
Ryan J Quinlan
Ryan J Quinlan
When I began to give Susan my complicated medical history she understood me better than anyone I've talked to. She helped me get in to see the right doc for the right diagnosis after all of my local docs treated me like I was crazy. Then I started her program and everything changed for the better. Suddenly I was making progress in areas that I had struggled terribly with for 2 years. I've been to 15 different PTs over the past 18 years trying to find someone who could help me. Some have helped, some have hurt, but no one has given me the right direction so clearly as Susan has. I am so grateful to have her in my life.
Angie Jackson
Angie Jackson
To say I love this office and the people in it would be an understatement. Susan’s EDS PT protocol has been life changing. I am 21 years old and I have HEDS. I’ve had 50+ surgeries and all kinds of interventions to deal with my symptoms. I can confidently say that Physical Therapy with Susan’s office has been the glue that held it all together. While all the interventions helped and were absolutely necessary, nothing would have lasted without pt. It is crucial to learn how to stay in alignment as well as Susan’s others ideas to maintain progress. It’s a life long journey but totally possible. I use what I’ve learned from Susan and apply her ideas daily. I am in the best place I’ve ever been with my health and everything it took to get here is worth it. 🙂
Megan Downing
Megan Downing
Susan's approach to physical therapy for EDS helps me focus on becoming functional for daily life. Before I started, I didn't have hope that I could ever achieve the quality of life that I desired. Her passion for EDS and all of her patients is inspiring. I am grateful to know her.
Sarah Farris
Sarah Farris
I languished in physical therapy for too many years. No matter who I saw, I always developed dizziness, trigger points and fatigue. The PT would tell me, I was de-conditioned and needed to build up strength and endurance. In 2020, I was diagnosed with hypermobile EDS and advised to find a PT knowledgeable in hEDS, otherwise I would continue to experience the negative effects of a PT giving me incorrect exercises for my condition. I located a hEDS knowledgeable PT, 30 minutes from my home and due to her waitlist, began seeing her two months later. I still experienced dizziness, fatigue and developed trigger points. A support group member highly recommended that I see Susan, as Susan developed a program specifically for individuals with hEDS and a program for those with CCI. Susan and her office manager explained that I had two options with her. Telehealth, which is her cash pay service or in office, that she accepts some insurances, which fortunately included my Blue Cross Blue Shield plan. I elected to see Susan in her office, even though she is located 4 1/2 hours from me. I schedule two consecutive days and obviously spend the night. Physical therapy with Susan has been a game changer! She individualizes her program to your needs, based on the pace you can endure. When tethered cord surgery was recommended by two neurosurgeons and my family and local health practitioners advised against it, Susan thoughtfully and practically explained how the surgery would benefit me. I had the surgery in November and experienced many improvements, some immediately following surgery. I also have severe CCI and AAI. Susan's program has made me so much stronger, reducing my pain levels and many other symptoms. Susan is very selfless and wants to share her program with as many as she can. As a result, sometimes she asks to put a Telehealth patient on hold or have one of her PT's briefly cover, or reminds an office patient, she will return shortly because Dr. Patel just referred a patient to her, who is on route to the airport. Susan meets with that patient to not only discuss Telehealth services but to also trial items for their condition, that most likely will make their journey home less painful and exhausting. Susan is an exceptional physical therapist and person! I cannot express my heart-felt gratitude for her and her team's compassionate care. Not only is Susan's program one of a kind, so is she!
Luanne Paschal
Before I went to Body in Balance Physical Therapy, I had been to many physical therapy places who were only treating my symptoms. I had no idea they were all due to Ehlers Danlos Syndrome and all my symptoms were related. The attention and care I have gotten from Beth and Susan has really helped me and I am so happy to have found them.
Jody Pinion
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