OpenHealth Q&A

Navigating Canadian Healthcare with Syringomyelia

Greetings everyone, At 27 years of age, I have been grappling with intense neck discomfort since I was merely four. For countless years, I was misled into believing that my struggles were solely a product of stress or mental health issues. However, the pain proliferated, radiating into my arms, hands, back, hips, and legs. Some days, it feels as if my body is subjected to jolts of electricity, an unending swarm of insects, or piercing knives. Chronic migraines, dizziness, fatigue, and persistent brain fog have been my companions for as long as I can recall. Despite my exhaustive efforts—physiotherapy, chiropractic care, massage, acupuncture, pain management clinics, injections, naturopathic remedies, and osteopathic treatments—none have provided enduring relief, only temporary solace. I've consulted rheumatologists, who diagnosed me with fibromyalgia without any conclusive tests; neurologists who advised me to simply cope with the pain, also without conducting tests; and a geneticist who determined that I am hypermobile. About a year ago, I advocated for a new spinal MRI, my last one having been in 2018. A few weeks ago, I finally received the results from a new cervical spine MRI, which I insisted on having printed. The physician's assistant began the process of referring me to a spine specialist. During this time, I discovered a syrinx (a spinal cyst) that has been progressively enlarging over the past decade. It has grown by approximately 60% in size and length, likely contributing to my neurological symptoms. While I can’t determine how long it has been present, I suspect it has always been a significant piece of the puzzle. The MRI also revealed a loss of cervical lordosis and early stages of degeneration. After waiting seven years for a referral, the Manitoba Spine Clinic finally responded. They stated that my first appointment would be with a physiotherapist; however, I am determined to secure a referral to a neurosurgeon. After more than two decades of navigating this healthcare journey, I feel utterly drained and somewhat anxious about the possibility of being dismissed once again. This feels like a crucial opportunity for my concerns—and my condition—to finally be acknowledged and addressed. I am immensely fearful of the prospect of this condition worsening or facing paralysis. I am resolved to confront these challenges head-on and seek the validation I deserve. I would greatly appreciate any insights or suggestions on what I should discuss or bring to my forthcoming appointment to ensure I receive the care I have been desperately in need of for over twenty years. If I can manage to address the syrinx, it would be a significant step forward; however, I also hope the spine specialists will delve into the underlying causes of my condition. Given my hypermobility and the indications of an autonomic disorder, I am eager for comprehensive evaluation and intervention.

Answers (1)

7/12/2025, 2:20:37 PM

OpenHealth AI

It's understandable to feel anxious and overwhelmed after years of persistent discomfort and a complex healthcare journey. Addressing your syringomyelia and acquiring the comprehensive care you deserve is crucial, and preparing for your upcoming appointment will be key.

Main Points:

1. You're experiencing significant chronic pain and neurological symptoms due to syringomyelia and hypermobility.
2. It’s important to be prepared for your appointment with the spine specialist to advocate for a thorough evaluation and treatment of your condition.

Explanation: Syringomyelia is a condition where a fluid-filled cyst (syrinx) forms in the spinal cord, which can cause a variety of symptoms, including pain, weakness, and neurological issues. Since the syrinx has been enlarging and correlates with your symptoms, it’s essential to address it and understand its impact on your daily life.

Actionable Next Steps:

1. Prepare a Symptom Journal: Document your symptoms, noting their frequency, intensity, and any triggers or patterns. This will help the specialist understand the full scope of your experience.

2. List Your Concerns and Questions: Write down specific questions about the syrinx, potential treatments, and whether neurological evaluation is warranted, considering your history of hypermobility and any other concerns like autonomic symptoms.

3. Bring Medical Records: Compile a summary of your medical history, including past diagnoses, treatments (like physiotherapy, pain management), and results from previous MRIs or tests. This will provide context to your current situation.

4. Advocate for Yourself: Clearly communicate your desire to see a neurosurgeon and discuss the need for a comprehensive assessment, including an exploration of the underlying causes of your condition. It's okay to express your concerns about being dismissed.

5. Consider Support: If possible, bring a support person to the appointment for emotional support and to help you articulate your concerns. Having someone else hear the conversation can also be beneficial.

6. Follow-Up Plan: Ask how you can stay engaged in your care process after the appointment, such as scheduling follow-ups or potential referrals to other specialists if needed.

It’s important to take this opportunity to ensure your voice is heard. You deserve detailed answers and support in managing your health. Trust the process and advocate for the care you need. Let me know if you need more guidance!