Concerns About Chiari Malformation?
At 19 years old, I have been diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS), superior mesenteric artery syndrome, and postural orthostatic tachycardia syndrome (POTS). For the past three months, I've been struggling with severe lower back pain, which has recently been compounded by debilitating migraines. My daily life has become increasingly difficult as a result. I am worried that I may be experiencing symptoms associated with Chiari malformations. Despite undergoing x-rays, CT scans, and MRIs for both my lower back and my head/neck—all of which returned normal results—I can't help but wonder about a potential issue. I noticed some slippage on my neck MRI. I would greatly appreciate your thoughts on this matter. I feel lost and am simply seeking clarity. Thank you!
Answers (1)
12/15/2025, 11:10:41 PM
OpenHealth AI
It sounds like you are going through a very challenging time with your health, especially given your existing conditions. I want to reassure you that it's understandable to feel concerned about new symptoms like severe back pain and debilitating migraines, especially with your history of hypermobile Ehlers-Danlos syndrome (hEDS).
Main Points:
- Chiari malformation is a concern, but your normal imaging results are a positive sign.
- Your current symptoms may relate to your existing conditions rather than Chiari malformation.
- Focus on symptom management and monitoring for any changes.
Explanation: Chiari malformation occurs when brain tissue extends into the spinal canal, which can lead to various symptoms including headaches and neck pain. However, MRI results typically provide valuable information, and since yours have shown no abnormalities related to Chiari, this suggests that it may not be the source of your symptoms. The slippage you mentioned may need further clarification from your healthcare provider to determine its significance.
Given your diagnosis of hEDS, your symptoms of back pain and migraines could stem from joint instability, muscle tension, or other complications associated with this condition. Managing these symptoms may include a combination of physical therapy, pain management techniques, and lifestyle adjustments.
Prioritized Next Steps:
-
Manage Pain and Symptoms:
- Consider gentle exercises or stretches specifically tailored for hEDS to strengthen your back and improve flexibility, avoiding any activities that provoke pain.
- Discuss pain management options with a healthcare provider, which may include physical therapy, medication, or alternative therapies such as acupuncture.
-
Monitor Symptoms:
- Keep a detailed journal of your symptoms, noting when they occur, their severity, and any triggers. This information can be useful for understanding patterns and discussing with your medical team.
-
Stay Connected to Support:
- Reach out to support groups or forums for individuals with hEDS for shared experiences, which can provide comfort and practical advice.
- Consider scheduling regular check-ins with your healthcare provider to discuss new symptoms and ongoing management of your conditions.
Remember, you're not alone in this, and seeking clarity about your health is paramount. Focus on managing your current symptoms and take things one step at a time. If you notice any significant changes or new symptoms arise, stay proactive in communicating with your healthcare team.
Related Questions
Healing Progress Post-GBS: Toe Concerns
I am a 28-year-old male, measuring 5 feet 10 inches and weighing 131 pounds. My current medications include Fomadatine and Zyrtec, prescribed due to my ongoing battle with Chronic Gastritis and SIBO. I maintain a healthy lifestyle, abstaining from both smoking and alcohol. My health concern revolves around the toe adjacent to my pinky toe on my left foot, as well as my pinky toe on the right foot. Since August of last year, I have been on the mend from Guillain Barre Syndrome. Recently, I've noticed that at night, the skin on my feet tends to turn a reddish pink, although this usually improves after I walk around. However, two of my toes have remained red, with one appearing slightly swollen. Generally, my pinky toes are quite thick, but the condition of my left foot's toe is worrisome for me. It seems that I'm unable to upload an image to illustrate my issue.
Swelling Beneath My Chin Near the Jawline
18-Year-Old Male: I'm reaching out to any medical professionals who might provide insights into my situation. I've been using marijuana since I was 14, but now, at 17, I'm making an effort to stop and have been clean for 18 days. Recently, I've discovered an unusual swelling located just beneath my chin, behind my jaw. It causes some discomfort when I move, yet it doesn’t feel painful continuously. I'm somewhat anxious that this could be indicative of a more serious issue, especially considering it's positioned near my chin's lymph nodes. Any advice or information would be greatly appreciated as it might help alleviate my worry.
Seeking Insights: My Journey with Undiagnosed Neurological Symptoms
Hello everyone, I'm a 34-year-old female grappling with neurological symptoms that first appeared in October, and I’m eager to hear from anyone who might have faced similar challenges. My journey began with unexpected migraines, blurred vision, and an ongoing sensation of being off-balance or intoxicated. Gradually, I began experiencing mainly sensory-related symptoms, such as tingling and burning sensations, feelings of extreme heat and cold, sharp pains radiating in my arms and back, as well as discomfort in my hands and toes, alongside intermittent numbness. I also endure varying degrees of weakness and heaviness in my right side, specifically my arm and leg, although I haven’t suffered complete functional loss. The nature of my symptoms is erratic; they fluctuate rather than consistently deteriorate. An MRI revealed mild, scattered lesions in the white matter, which were deemed nonspecific. Further tests from a lumbar puncture returned normal results, showing no markers of inflammation, and the oligoclonal bands were not present. A thorough range of lab tests yielded no significant findings. After evaluating my case, the neurology team suggested a possible diagnosis of MS and administered a three-day course of intravenous steroids. While I noticed a slight improvement in some sensory pain, my symptoms persist and continue to vary day by day. I still experience headaches and pressure in my head along with episodes of blurred vision, but there have been no new deficits since treatment. I am reaching out to connect with others who have had similar experiences. I would like to learn about the insights or diagnoses you encountered and what treatments proved beneficial (such as those related to migraine disorders, dysautonomia, or sensory neuropathy, for example). If you have navigated a similar path, I would greatly appreciate your sharing your story. Thank you!
Should I Seek Medical Attention for Left Ear Pulsatile Tinnitus?
A 31-year-old woman reports an ongoing issue with pulsatile tinnitus, which she is currently experiencing solely in her left ear. Although she's noticed this condition intermittently before, she hadn’t paid it much mind due to the absence of pain. Recently, however, her curiosity piqued her interest in researching the condition, where she stumbled upon information suggesting it could be serious. Usually, she avoids searching online for health worries, but now she is contemplating whether a visit to the doctor might be warranted. Can anyone advise on the need for a medical evaluation in this case?
Concerns About Angular Cheilitis
I’m a 23-year-old woman with no history of smoking, and I’m seeking assistance regarding a health issue. Back in January, I experienced angular cheilitis three times, each episode involving a minor crack at the corner of my mouth that healed within a few days. Following the last occurrence, I became quite anxious due to saliva accumulation in that area. I found myself frequently brushing my finger along that spot. After a few days, I observed a small area forming that appeared white and had a rough texture. Eventually, I realized it was not just a coincidence, and I started taking action, but only after it became noticeably larger. To address it, I cleaned the area with a mix of alcohol and apple cider vinegar. I’m uncertain about what this issue could be, but I’ve recently begun using over-the-counter Clotrimazole cream while also keeping the area moisturized with either lanolin or petroleum jelly. Unfortunately, I haven’t noticed any improvement, and I’m concerned as it seems to be expanding. The patch continues to be rough and excessively dry. Although I can open my mouth wide without any cracks forming, I do feel tension in the skin, similar to having a bandage over that location. At times, I experience a burning sensation after thorough washing, and I’ve noticed tiny red spots appearing on the outer edges of the patch sporadically.