Understanding Myelomalacia: A Personal Account
In my experience with multiple sclerosis, I discovered that my neurologist had not reviewed any of my MRI reports since 2015. It wasn't until I obtained the records in 2022 that I learned about the presence of myelomalacia, a herniated disc, and moderate spinal stenosis in my condition. Alarmingly, my spinal cord is now showing signs of flattening. To make matters worse, I found out that my case file has been marked, preventing other doctors from referring me to a spine surgeon or conducting an EMG test. It seems there is an ongoing attempt to conceal my neurologist's oversight. As a proactive step, I have transferred my medical records to the MS Clinic at Burnaby Hospital in hopes of receiving the necessary care. However, if I do not see progress, I am considering reaching out to the media and potentially seeking surgical treatment abroad in Mexico.
Answers (1)
7/2/2025, 3:40:37 AM
OpenHealth AI
It sounds like you are facing a challenging situation with your health, particularly regarding myelomalacia and your experiences with your neurologist. It’s understandable to feel frustrated, especially when it comes to significant findings like spinal cord flattening, which may impact your overall well-being. Let’s focus on actionable steps to ensure you receive the care you need.
Main Points:
- Understanding Myelomalacia and Spinal Health: Myelomalacia indicates softening of the spinal cord tissue, which can lead to neurological issues. Spinal stenosis and herniated discs may also contribute to symptoms.
- Next Steps for Care: It's crucial to pursue comprehensive evaluation and treatment options.
Explanation:
Myelomalacia can arise from various factors, including trauma or chronic pressure on the spinal cord, like from herniated discs. The presence of spinal stenosis can further complicate your symptoms and impact mobility or strength. Given that your medical oversight has potentially hindered access to appropriate care, it's good that you are taking proactive steps by transferring your records to a specialized clinic.
Prioritized Next Steps:
-
Follow Up with the MS Clinic: Make sure to schedule an appointment with the MS Clinic at Burnaby Hospital as soon as possible. Bring all your MRI reports and any medical history that you have gathered. Clear communication about your symptoms and concerns will help doctors assist you better.
-
Seek a Multidisciplinary Approach: Request evaluations from specialists not only in neurology but also in pain management and spinal surgery if necessary. This may help you understand all facets of your condition and get a comprehensive treatment plan.
-
Document Everything: Keep a detailed record of your symptoms, treatments tried, and any interactions with healthcare providers. This documentation can be essential for future medical consultations and if you pursue legal or media avenues.
-
Consider a Second Opinion: If progress is slow or you feel your concerns are not being addressed, don't hesitate to seek a second opinion from a different neurologist or spinal specialist. They may be able to provide insights or treatment options that others have not considered.
-
Explore Patient Advocacy: If you encounter systemic issues or believe your previous care was negligent, consider reaching out to patient advocacy groups that can provide support and guidance on navigating healthcare systems.
-
Research Surgical Options Thoughtfully: While considering surgery abroad, ensure the facilities and surgeons are reputable and that you understand the risks involved with any surgical procedure.
Remember, it’s your health, and you have the right to seek the best possible care. Please take these steps to prioritize your health and well-being, and feel free to update me on your progress or if you have any more questions.
Related Questions
Are My Symptoms Indicating an Impending Stroke?
I’m a young adult female, weighing 99 pounds and standing 5 feet 2 inches tall. I do not smoke, vape, or consume alcohol, and currently, I am undergoing tests for POTS and HEDS. For the past two weeks, I have been experiencing intermittent discomfort in the upper region of my head, particularly in the back and temples. These aren’t typical headaches, but rather sudden twinges of pain that occur sporadically throughout the day. Additionally, over this same period, I have been dealing with bouts of vertigo—probably about 4 to 5 days where it came and went. A few days back, I also encountered a tingling sensation in my arms, which I can’t tell if it was simply due to anxiety. Given that my aunt suffered a stroke in her thirties, the prospect of having a stroke terrifies me. I find that the emergency room here primarily prescribes pain medication if you mention head discomfort, which leaves me uncertain about what steps to take next. Could these symptoms signal an impending stroke? Furthermore, I've also been experiencing pain in my left leg, though I’m unsure if that’s connected to my other symptoms.
Identifying Skin Marks on My Child
My 5-year-old daughter, who has no history of allergies, has developed peculiar skin marks over the past four to five days. Each morning, I observe these blemishes, which mysteriously disappear by the next day, only to reappear in different locations. The majority of these spots are located on her lower back, buttocks, and the back of her thighs, although I've also seen some on her upper back and a single one on her cheek. As an additional note, she began exhibiting mild cold symptoms last night, including a cough, some mucus, and a slight increase in body temperature. To provide further context: she mentioned that the marks are somewhat itchy, but she hasn’t been scratching them excessively.
Impact of Tegretol Overdose at Age 7
As a woman now in her late thirties, I reflect back on a significant event from my childhood. At just seven years old, I accidentally ingested a large quantity of Tegretol, a medication prescribed to my brother for his epilepsy. Without realizing the danger, I swallowed a handful of those pills and fell asleep on the couch next to my mother. To my surprise, I regained consciousness a week later in a hospital bed. My mother recounted that I had suffered a seizure, at which point she found herself unable to awaken me, leading to a state of coma. Once I awoke, the emotional shift was profound; I transitioned from sadness to experiencing a tumultuous range of feelings. I am now curious about how such an overdose could have impacted my brain function. I attempted to search online for insights but came up empty-handed. Any information or shared experiences related to brain effects from similar situations would be greatly appreciated. Thank you in advance!
Inquiry Regarding FDG-PET Scan Findings
I recently underwent an FDG-PET/CT scan for my brain to investigate some cognitive difficulties I've been experiencing. Although the report is now available on My Chart, my follow-up appointment with the doctor is scheduled for three weeks from now. I have a query regarding the standard deviation scale presented in the report, which lists values from -2 to -4.6. What does the lowest value signify? Is the scale graded on a 1-5, 1-10, or perhaps 1-100 basis? I appreciate your assistance with this! Notable regions noted for decreased metabolic activity include: - Left Inferior frontal gyrus, triangularis: SD "4.6" - Left Heschl gyrus: SD "3.8" - Left Superior temporal gyrus: SD "3.6" - Left Middle temporal gyrus: SD "3.4" - Left Supramarginal gyrus: SD "2.6" - Left Inferior parietal lobule, supramarginal area: SD "2.1" Other areas displaying low metabolism are: - Right Superior frontal gyrus, medial: SD "3.2" - Left Superior frontal gyrus, medial: SD "2.2"
Unexplained Left Chest Pain, Electric-Like Jabs in Lower Back, and Unusual Headaches
Hi there, I’m a 15-year-old experiencing some peculiar health issues lately. A visit to my doctor led to a diagnosis of anxiety and poor posture after I complained about headaches and strange, electric sensations rising through my head. However, after that appointment, I became aware of pain in my heart and strange discomfort in my left chest accompanied by difficulty breathing. Initially, I thought these symptoms aligned with anxiety, but they persisted long enough to cause concern. To rule out any serious conditions, I underwent a blood test, which fortunately came back normal. Despite the positive results, I continued to feel unusual pains in my heart region and a peculiar ache in my lower abdomen. The doctor had previously mentioned my poor posture and identified an issue with my occipital nerve, which I’ve somewhat addressed. Now, though, I find myself having intermittent back pain and brief discomfort just beneath my left lung. These pains are indeed strange; they don’t always last long, sometimes just fading after five seconds or they might stick around for several minutes. I tend to spend a lot of time in bed and don’t often leave the house, yet when I do, these pains still occur. Thankfully, they aren’t debilitating, but I can't help but feel anxious thinking something might be significantly wrong with my health. It’s unsettling and I’d prefer not to dwell on such thoughts. To summarize: I experience chest pain in my lower left quadrant, specifically near my lung, alongside a mild but uncomfortable sensation that waxes and wanes. Additionally, I suffer from headaches located on the upper left side of my head. I apologize for any grammatical errors as I used voice-to-text for this message. Another detail that might be relevant is that I have recently quit vaping, now almost 22 days ago, and I wonder if this could be part of the recovery process.