OpenHealth Q&A

Navigating Challenges with Chronic Spondylodiscitis: Seeking Advice

Greetings, everyone! I hope this message finds you well. I wanted to share my experiences over the past eighteen months dealing with chronic spondylodiscitis, which was identified through MRI scans after the onset of symptoms affecting my spine. The diagnosis was confirmed via imaging that indicates the condition is persistent, appearing in both T1 and T2 scans. Despite undergoing several MRIs over eight months, the issue seems to remain unresolved, with ongoing flare-ups evident. My research suggests that the condition may be aseptic, septic, or possibly a low-grade bacterial infection. In November 2024, I underwent a biopsy, which, unfortunately, did not successfully reach the affected disc. During my hospitalization, I was treated with intravenous antibiotics for twelve days, which significantly alleviated my pain and discomfort. However, although I experienced some relief for about eighteen days post-treatment, I still feel that my response to antibiotics was insufficient overall. My inflammatory markers are concerning; while my C-reactive protein is low, my ESR levels have fluctuated between 15 and 58. Despite this, the MRI taken during my antibiotic treatment revealed the same persistent flare. Recently, I had a second biopsy, and to my dismay, the doctor did not order PCR analysis or histopathology, tests I had specifically requested prior to the procedure. Is it common practice for these tests to be overlooked? I consulted with a neurosurgeon yesterday, and he suggested I seek inpatient care, particularly from an infectious disease specialist, as I might require an extended course of intravenous antibiotics followed by oral treatment. Unfortunately, previous attempts to secure inpatient care have not been successful. The neurosurgeon mentioned that a negative culture from the biopsy does not eliminate the possibility of an infection. He noted the biopsy sample was minimal, suggesting the need for another procedure and the proper tests that were initially requested but not ordered. He also suggested that I may need treatment based on clinical suspicion, even without test results confirming an infection. Currently residing in Brazil, I’m starting to contemplate the idea of reaching out to a doctor abroad who specializes in Lyme borreliosis for guidance on antibiotic treatment, as I have not been able to secure effective care here. After waiting four months for the biopsy results only to discover essential tests were not conducted, I find myself frustrated. If this were a case of acne, obtaining long-term antibiotics would likely be straightforward; however, I doubt that oral antibiotics can achieve the level of efficacy that IV treatments did. I also attempted to arrange for these tests through my insurance, but the sample was compromised, and while PCR testing may still be performed, it won't be as effective as if it had been done initially. Steroids and immunosuppressants have not provided the same relief as antibiotics; they offer some benefits but fail to match the efficacy I experienced with oxacillin and meropenem treatments. Recommendations seem to suggest continuing treatment without a clear diagnosis or being admitted as an inpatient. My suffering has spanned over two years since the onset of this condition, with a significant portion of that time spent without proper diagnoses or ordered tests by healthcare professionals. What options do I have in such a situation? When I go to the emergency room with recommendations for treatment, I’ve been turned away before. Any insights or advice would be greatly appreciated.

Answers (1)

3/21/2025, 4:40:55 PM

OpenHealth AI

I appreciate you sharing your detailed experience with chronic spondylodiscitis, as it highlights the considerable challenges you are facing. Managing this condition can be complex, especially given the uncertainty regarding diagnosis and effective treatment. Here’s a summary of the key points and specific next steps you can consider to navigate your situation:

Key Points

• Your chronic spondylodiscitis has been persistent, with fluctuating inflammatory markers.
• You've experienced some pain relief from IV antibiotics but are concerned about the continued flare-ups and incomplete testing.
• There's a recommendation for inpatient care and possibly further targeted treatment.
• You express frustration over the lack of organization in test processing and the need for more precise diagnostic procedures.

Explanation

Chronic spondylodiscitis can stem from various causes, including infections (bacterial or otherwise) and may require tailored antibiotic regimens based on individual circumstances. It’s essential to identify the underlying cause for effective treatment. In your case, there's a potential for treatment based on clinical suspicion, especially given the negative cultures observed. Obtaining testing like PCR and histopathology is crucial for making informed decisions moving forward.

Actionable Next Steps

1. Secure a Specialist Consultation:

   • Reach out to an infectious disease specialist directly if possible, especially one familiar with chronic infections related to spondylodiscitis.
   • If inpatient care has been difficult to secure, consider requesting specific documented reasons from the healthcare facility so that you have a clear understanding for future visits.

2. Document Your Symptoms and Treatments:

   • Keep a detailed log of your symptoms, their severity, any medications taken, and their effects. This can help your providers understand the progression and severity of your condition.

3. Advocate for Testing:

   • When you meet with your healthcare providers, clearly express your concerns about the missed tests. Request that any future procedures include PCR analysis and histopathology to improve the likelihood of accurate diagnosis.

4. Consider Alternative Opinions:

   • If you feel challenged in securing satisfactory care, seeking a consultation with a physician outside of your local area (including internationally) may be a prudent option, especially if they specialize in cases similar to yours.

5. Engage Support:

   • Connecting with patient advocacy groups or communities (both online and local) may provide additional resources and support. They can help you navigate the healthcare system more effectively and provide insights from others with similar experiences.

6. Prepare for Emergency Visits:

   • When going to the emergency room, bring your symptom log, previous test results, and a concise summary of your treatments. Clearly stating the objective (seeking help for flare-ups) can assist staff in understanding your situation better.

7. Explore Treatment Options:

   • Discuss the possibility of long-term oral antibiotics with your current team, highlighting your previous positive responses to IV antibiotics. There may be combinations or adjustments that could benefit you.

Your frustration is completely understandable given your experiences. It’s important to remain persistent in advocating for your health and seeking the treatments you need.