Your First Ehlers-Danlos Syndrome/ Full-body Hypermobility Specialist Visit
Our team wants to help you overcome chronic pain from unstable joints!
This page will give additional details specifically regarding your first visit to our offices for hypermobility syndrome and hypermobile EDS (hEDS, EDS III). To read more general information about what to expect at your first visit, please see our pages on Your First Prolotherapy Visit, Frequently Asked Questions, and Prolotherapy Treatment Prices.
At the bottom of this page, there is an intake form. If you would like our team to review your case to see if you sound like a good H3 Prolotherapy candidate, please feel free to use that form or send us an email directly to firstname.lastname@example.org.
Preparing for your visit
During your first visit, you may be in our office for approximately 3-4 hours. For more severe cases, especially neck cases, your first visit may be divided into 2-3 days to provide enough time for the recommended testing and treatment while taking into account the exhausting effort that a doctor’s visit or movement can be for some of our most extreme cases. We understand that for some of you, simply riding in the car and putting your neck through a few movements can cause severe attacks. Therefore, we may space the testing and treatment out to make the overall experience a little easier to handle. When we review your case prior to your visit to the office, we will be able to better assess the needs of your case, and the extent of recommended testing. This will help guide the scheduling process for both testing and treatment. Please remember that all new neck patients must have a family member or friend to accompany them to the visit.
Eat prior to your appointment. You must eat before your appointment, especially if you are planning on receiving Prolotherapy treatment! Please eat a good breakfast before coming in, ideally one that contains protein. You can also bring snacks/food to your appointment.
Test Results: If you have MRI, X-ray, CT, EMG, DMX, or other pertinent lab reports, please bring them with you to the appointment. If you have sent us your reports ahead of time, our team will ensure those reports are put into your chart.
Exam and Treatment
Introduction and vitals: A nurse or clinical assistant will take you and your appointment companion back to the clinical area and your assigned exam/treatment room. They will obtain vital signs, including temperature, blood pressure, pulse, and weight. They will also review your initial phone history and confirm any changes or updates you wish to discuss. Your clinical assistant will be an important part of your day today and will be with you throughout the visit! They will take notes for you, and review all of the information and instructions from the practitioner throughout your time in the clinic, and summarize everything at the end of your visit. If you have questions between today and your next visit concerning your treatment or recommendations made by the provider, your clinical assistant will be your primary point of contact.
Exam and consultation: Your physician and/or PA will review your medical history and do a physical exam to assess your spine and other painful peripheral joints, concentrating on your most problematic areas. He/she will review your symptoms, and perform specific functional tests based on your individual case. He/she will then talk with you in more detail about your condition and symptoms to make an assessment and recommendation for a testing and treatment plan. In many hEDS patients, we understand if you say that “every joint” is a problem, and we can help you prioritize the spinal segments and other joints that are most limiting your ability to function.
Imaging during the visit: If the head and neck are among your primary concerns, a Digital Motion X-ray (DMX) will most likely be recommended as a baseline for visualizing the cervical instability. This is essentially a video of your spine in motion and provides excellent information for your provider as to what is truly happening with your neck to cause your debilitating symptoms. Prior to this test, your provider may perform some numbing injections around the neck to prevent muscle guarding and, therefore, obtain a more accurate picture of the underlying cervical instability. Your provider will review the DMX results and, combined with the information obtained by the history and exam, will recommend a treatment plan.
Musculoskeletal Ultrasound may be used to visualize tissues during the initial exam and/or to help with injection guidance during Prolotherapy. It is an excellent tool for documenting joint instability. While ultrasound is not needed to guide injections for the majority of anatomical landmarks treated during H3 Prolotherapy, rest assured that our providers always have it available to use, as needed.
Prolotherapy treatment: Patients come to us because they want to start on a Regenerative Medicine treatment program as soon as possible. Based on your overall health and medical history, along with the physical exam and imaging, a treatment plan will be created specifically for you. If the practitioner feels you are a good candidate for Prolotherapy, treatment is generally started at this first visit.
Treating multiple areas: One reason EDS patients seek care here is that we can treat multiple areas during the same visit, and can tailor Prolotherapy solutions to each individual joint. (Not a one-solution-fits-all approach.) There is still a limit as to what can be safely and effectively treated during one treatment session. Thus, there are some “whole body” cases whose treatments are divided up over the course of 2 days. This is especially common in patients who are traveling from afar to address as much as possible within each trip. If you want to address many areas with Prolotherapy, we can discuss the ideal way to best divide up the treatment. Using the detailed intake form below, please note if you are looking to receive treatment for multiple areas so we can determine the best schedule for accommodating the potential treatment.
Post-Prolotherapy Treatment: After treatment, you will rest with some moist heat on the treated areas. This helps soothe the treated areas and increase circulation. While you rest with heat, the assistant/nurse will review our Post-Prolotherapy Instruction sheet with you and any other recommendations that the provider has made.
Therapeutic devices: If your practitioner recommends a therapeutic device for your condition (such as a cervical collar, heart rate variability monitor, head/chest weights, or rehabilitation exercise equipment), your nurse/assistant can advise you on where to obtain them. It may be advised to start using some devices right away, and others may come into your treatment plan after a couple of visits, as the ligaments show signs of stabilizing.
Working with your other healthcare providers: If there are any other outside laboratory tests, nutritional suggestions, or exercise instructions, these will be discussed during the visit with the provider, and again with your clinical assistant/nurse upon wrapping up the visit. In addition, if we need to reach out to your other healthcare providers, including your physical therapist or PCP, we will do so in order to give them an understanding of the treatment that was done and what specific activities/exercises are recommended and/or should be avoided at this time. Please bring the contact information for your other healthcare providers so we may contact them if needed.
Follow-up appointment: You can schedule your next Prolotherapy visit with your clinical assistant in the treatment room, or at the checkout desk prior to leaving the office. Due to the limited availability of appointments, we suggest patients making an appointment as soon as you know your schedule, to ensure you get your preferred appointment day.
Traveling after treatment
Transportation home or to a hotel: It is ideal that you are accompanied to the visit by a family member or friend who can drive you to/from the office and be with you during the treatment. But we understand that some patients must travel here by themselves. When scheduling your first appointment, our team can discuss some options with you, depending on where you are going afterward. For instance, some local hotels in Fort Myers offer free shuttles to our patients. Other patients prefer taxi or rideshare transportation. Please note, you cannot drive after receiving Prolotherapy to the neck and absolutely must be accompanied by a driver and/or arrange for pre-approved transportation.
Stay local: We encourage anyone who has to fly to our office for an appointment to stay locally overnight after the first appointment. Your first appointment is typically a pretty long and involved day. You will find that flying in the day before and staying in a hotel the night before and after your first treatment will make for a more relaxing and less overwhelming process, especially if your mobility is limited and traveling is a major challenge. Our hope is that as you improve during the treatment series, and symptoms subside, travel will become much easier for you, and you may not feel it necessary to do an extended stay for subsequent visits. These things will all be discussed based on your individual case.
EDS is a journey – gather your support network and embrace it!
It is our honor to work with EDS and hypermobility patients! We love to see their function improve through the treatment series and to see them stop needing a wheelchair, and avoid drastic/disfiguring surgeries. H3 Prolotherapy triggers the ligaments to strengthen, even in EDS/hypermobile ligaments! It generally requires a series of treatments, which build upon each other. While there is no cure for EDS itself, H3 Prolotherapy can provide pain relief and joint stabilization to make living a more normal and functional life possible. This is our sincere hope for you! We have seen “hopeless” cases who did not think they would make it through high school later go on to complete graduate school, and those who barely had the joint stability to walk into the office at the first visit later go on to compete in gymnastics and teach dance. You cannot change the genetic makeup of your ligaments, however, you can support their strengthening! We will give you the best information and guidance we have gained in our 26+ years on how to accomplish this. The rest is up to you! We are so excited to walk alongside you on this journey and be part of your hypermobility support team!
How do I know if I’m a good candidate?
Just like you, we want to make sure you are a good fit for our clinics ahead of your appointment. We value your time and we also schedule a lot of time with our providers and team to accommodate your visit. Most of the EDS patients who require our specialists’ care travel quite a distance from out of the state/US, but even if you are located within a couple of hours from our clinics, we want to make sure you are a good fit for us first! Give as much detail as you wish to share to help our team determine if you are potentially a good Prolotherapy candidate. You can upload MRI reports or other imaging reports if they are relevant to your current case.