What Upper Cervical Instability and shared experiences have taught me about hope and healing
Last November, after nearly three decades of unexplained pain and symptoms, I finally received my first clear diagnosis: a syrinx extending from C5 to T12.
I didn’t know what that meant at first, but it marked the beginning of finally understanding what my body had been trying to tell me. What followed was a long year of tests, specialists, and new names for old pain, a journey familiar to anyone living with chronic illness.
The Diagnoses That Brought Clarity – Within twelve months, these were confirmed:
- Syringomyelia – Diagnosed by my primary care physician via MRI of my entire spine
- Hypermobile Ehlers-Danlos Syndrome (hEDS), POTS, and MCAS – Diagnosed by Dr. Trevino, Clearwater, FL (telehealth available)
- Cranio-Cervical Instability (CCI), Internal Jugular Compression, and Vagus Nerve Damage – Diagnosed by Dr. Hauser, Fort Myers, FL
- Cervical Instability (UCI) – Diagnosed by Dr. Hatam, Upper Cervical Instability Facebook group resource
- Encephalopathy – Diagnosed by Neurologist Dr. Aung-Din and Sara, NP
Each new diagnosis brought both relief and weight. Relief in being heard. Weight in realizing how many pieces were involved. But at least now, there was direction.
What I Found in Online Support Groups:
When I joined Upper Cervical Instability, Syringomyelia, EDS, POTS, and Chiari groups online, I immediately noticed three common threads:
- Chronic pain that most people never see
- Medical gaslighting that leaves deep scars
- Despair, the kind that comes from fighting daily without answers
But something else appeared too: hope.
These communities often become the starting point for real healing, not because they replace doctors but because they connect people who understand. They share names of specialists, what treatments helped, and what questions to ask next. That shared knowledge has become a lifeline for so many of us.
Learning to Move Forward with What We Know:
Understanding conditions like Hypermobile Ehlers-Danlos Syndrome, Syringomyelia, and Upper Cervical Instability can feel overwhelming. There are no quick fixes, and treatment looks different for everyone. But knowledge gives us power to make better choices about care, activity, and stability.
For many people living with upper cervical instability, progress is gradual. It often comes from combining medical guidance, careful self-observation, and shared experiences from others walking the same path. Sometimes that means finding the right specialist, and sometimes it means discovering small changes that make daily life a little easier.
After 27 years of uncertainty, receiving eight major diagnoses in one year reminded me of three important truths:
- Research and awareness are growing. Doctors are beginning to better understand how instability, connective tissue disorders, and neurological symptoms intersect.
- Online patient communities are making a difference. Groups like “Upper Cervical Instability Awareness” help people find qualified providers, learn about safer treatments, and feel less alone in the process.
- Collective learning matters. Every shared story helps someone else find the next step forward, and it also teaches us to become better advocates for ourselves.
Living with instability means adapting and learning continuously. The more we share and support one another, the closer we all get to finding lasting stability, comfort, and hope.
My Care Team and Specialists:
If you are still searching for help, these are the practitioners who have been the most valuable in this process:
- Dr. Trevino – Clearwater, FL – Ehlers-Danlos, POTS, MCAS (Telehealth available)
- Dr. Farahvar – Sarasota, FL – Neurosurgeon who is conservative and validating. Only operates when absolutely necessary.
- Dr. Hauser – Caring Medical – Fort Myers, FL – Prolotherapy specialist using advanced imaging such as DMX, Cone Beam CT, and Ultrasound
- Dr. Hatam – Upper cervical specialist offering MLS laser therapy and KT tape protocols (Dr Hatam is virtual and helps offer a second opinion on DMX studies)
Treatments that I have tried, and others that I have heard mentioned the most:
KT Tape: Relief in the Simplest Form
After months of medical appointments, the biggest breakthrough came from something I never expected. A cousin casually suggested KT tape.
I was skeptical, but after applying it, my pain disappeared. No migraines, no neck pressure, no headache behind my eyes. By day five, I noticed about a 70 percent reduction in swelling. I could actually see the bones at the base of my neck again. What I thought was “back fat” was actually inflammation all along.
I wanted to include a few reasons why KT tape can help with cervical instability, because the science behind it surprised me too:
• Proprioceptive feedback: The tape gives your brain constant information about your neck position, which helps reduce the tiny, unstable movements that trigger symptoms.
• Gentle external support: It takes pressure off fatigued muscles and ligaments without restricting you.
• Improved lymphatic flow: The tape lifts the skin slightly, which helps drainage and reduces swelling and inflammation.
• Nervous system calming: Steady sensory input helps your body stop “guarding” and relax out of the constant fight-or-flight response.
• Better posture cues: It encourages healthier alignment without forcing anything extreme.
• Reduced muscle tension: It interrupts the cycle of tightness, spasm, and compensation that comes with instability.
Here is what has helped me use it safely:
• Remove the tape in a warm shower
• Use baby oil or adhesive remover wipes
• Choose latex-free or hypoallergenic tape if you are sensitive (KT tape worked best for me)
• Search “KT Tape for cervical instability” and watch a few placement videos before trying it
It may sound small, but for those of us living with chronic pain, small can be life-changing. Hope doesn’t always arrive as a prescription or a surgery. Sometimes it comes in a twelve-dollar roll of tape.
Choosing Hope Over Despair:
This past year has shown me that healing doesn’t always mean the pain is gone. Sometimes it just means learning how to live with it a little better each day.
Before one of my neurosurgeon appointments, I broke down crying to my husband. In frustration I asked, “What would you do?” He sat quietly for a while before answering. Finally, he said, “I would do what makes me comfortable and what makes me stronger.”
I fired back instantly. “Oh yeah? Get stronger? Every exercise makes me flare up. Everything makes my head pressure worse. Everything hurts.” I cried and cried.
During the appointment, the neurosurgeon said almost the same thing my husband had. He explained that pain management would require patience and experimentation. Whether it was an ice bath, sauna, meditation, prayer, or something else entirely, it would take trial and error to discover what my body could handle.
He said he could give me fifty different treatment plans and thirty different exercises, but what worked for someone else might not work for me. He told me to watch for red flag symptoms like nerve pain or electric shocks. If those appeared, stop that exercise and try something new. Keep going until I found something my body responded well to.
In other words, get comfortable and get stronger. Exactly what Ben had said before the appointment. I wanted to flick someone in the forehead (LOL), two men telling me how to deal with pain they have never experienced.
But here is the truth. They were both right. I do need to find what works for me.
I took a few days to sit with it all and not talk about it with anyone. My outlook matters. If I sit in despair and self pity, it hurts not only me but also the people around me. Despair is real and sometimes unavoidable, but it cannot be the place we live. Feel it, acknowledge it, and then move forward.
Doctors I trust, like Dr. Hauser and Dr. Farahvar, have reminded me to focus on what brings happiness and calm. I will admit, I don’t love hearing that advice during a five-hundred-dollar appointment, but they are right. Sometimes I need to step away from all of it and just color with my kids, or let them bring the bunny inside for a day, or convince my husband to build a palace for my future goslings.
And sometimes I stop everything and pray for all of you. I pray that you find answers, that you find moments of joy through the pain, and that you find your version of what kinesiology tape has done for me.
I still pray for answers every day, for all of us, that we keep finding small things that bring peace, comfort, and strength to keep going. Healing might not mean the pain disappears, but it can mean that hope wins a little more often than despair.
Thank you to Dr. Hatam and this group for creating a space where learning, encouragement, and real conversations like this can happen. Your work helps so many of us find direction and hope.
Coming Next:
I’ll be sharing more soon about the practical methods that help me day to day – things like prism glasses, a head-up lifestyle, and how my body responds to the exercises I try. I’ll also share updates on my experience with prolotherapy once I start in January, whether it helps or not.
Blue Skies & Endless Adventures,
Heather Anne
Disclaimer & Affiliate Note:
I’m not a medical professional, and nothing in this post should be taken as medical advice. I share my experiences in hopes that they might help others ask better questions and find the right support for their own health.
Some of the links I share are affiliate links, which means I may earn a very small commission (so far, a whopping $3.56!) at no extra cost to you. I only link to products that I personally use and find helpful in managing daily life with chronic pain.
In Case Any of This Sounds Familiar:
I keep sharing what I’ve learned because I know I’m not the only one walking through this. The medical system is missing too many of us. If anything I’ve shared sounds familiar, here’s a simple breakdown of some of the conditions I mentioned.
What are these conditions?
Cervical instability (CCI) occurs when the ligaments and joints in the neck become too loose to properly support the spine, leading to excessive movement, pain, and neurological symptoms. https://www.facebook.com/share/g/1J6sc9vj8Z/
Atlantoaxial instability (AAI) is a specific type that affects the top two vertebrae (C1 and C2), where lax ligaments can cause added pressure on the brainstem or spinal cord. https://www.facebook.com/share/g/1J6sc9vj8Z/
Hypermobile Ehlers-Danlos Syndrome (hEDS)
A genetic connective tissue disorder that causes overly flexible joints, fragile skin, chronic pain, and instability in the spine and other body systems. It affects how collagen works throughout the body. Learn more: ehlers-danlos.com/heds
Postural Orthostatic Tachycardia Syndrome (POTS)
A type of autonomic nervous system dysfunction where the heart rate jumps abnormally high when standing. It can cause dizziness, fatigue, brain fog, and feeling faint or shaky.
Learn more: dysautonomiainternational.org/pots
Mast Cell Activation Syndrome (MCAS)
A condition where mast cells release chemicals in the body at the wrong times, leading to rashes, hives, flushing, swelling, allergic-type symptoms, and increased sensitivity to foods, chemicals, or scents. Learn more: tmsforacure.org
What’s the connection?
These conditions often show up together. (& in my humble opinion, add upper cervical instability to the list) Many people with hEDS also develop POTS and MCAS. In my case, mold exposure may have been a major trigger. For others, it could be trauma, illness, or even surgery that sets things off. The more we understand, the better we can begin to heal.
More Resources:
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