OpenHealth Q&A

Seeking Guidance on Health Challenges

**Height:** 5 feet 7 inches **Weight:** 190 pounds **Nationality:** American **Gender:** White Female **Medical Background:** History of Osteosarcoma. - Underwent major surgeries including a knee and femur transplant. Post-operation, I returned for additional surgery to address missed muscle and tissue, leading to a confusing recovery phase. Initially, I had some mobility but lacked strength after the knee and femur operations, managing reasonably well during physical therapy. However, following the tissue extraction, my situation deteriorated, resulting in a loss of mobility even as my strength returned. This marked a significant shift in my physical therapy journey. - Later on, the cancer reappeared in three areas of my lungs, consequently prompting another significant surgery to remove portions from each lung. Despite enduring further chemotherapy and extensive recuperation, I ultimately received clearance but felt I had never fully recovered. --- To summarize my experience, I am a 22-year-old female who underwent around twelve medical procedures over the past few years due to Osteosarcoma. Of particular concern are my knee and femur replacements, alongside the removal of muscle and tissue in my left leg. I've been told that remnants of my kneecap were left behind without my knowledge, which has caused its own set of issues and embarrassment. During this challenging time, I lacked familial support, and the physical therapists who did assist me often overlooked my other medical complications, such as my port infiltrating, instead focusing solely on immediate results. I experienced feelings of shame as my pain was dismissed, which compounded my distress. At such a young age, these experiences left a mark, leading me to feel too ashamed to continue with physical therapy, ultimately resulting in a sense of hopelessness regarding my recovery. I hit rock bottom, feeling like I was constantly being pushed further down. Without family to confide in and with so-called friends who only associated with me due to my illness, I sank deeper into depression, surrendering my hope of walking properly for what felt like the rest of my life. Sadly, I cannot revisit my original surgeon, and having spent substantial time in the hospital, I am left confused about navigating my care options. This uncertainty is both terrifying and humiliating. Every movement brings incredible pain, causing my leg to swell dramatically after even minor tasks, rendering physical therapy nearly unbearable. Although I’m open to trying again, I doubt my ability to withstand the physical demands of therapy, especially with the ongoing pain and fluctuating swelling. I’ve been researching MUA procedures, which seem like a potential solution for me, but it has been a considerable amount of time, and I’m uncertain about where to begin. I feel exhausted, and I worry my hips might be the next problem region. Finances are a concern as well, compounded by the impact of recent legislation that might hinder my access to necessary treatments, leaving me feeling lost in self-advocacy. I am covered by Hoosier Care Connect Plus, but I’m unclear about its effectiveness. Unfortunately, I can’t afford any out-of-pocket expenses, so I’m reaching out for any guidance or support you may have to offer.

Answers (1)

7/10/2025, 12:20:58 AM

OpenHealth AI

Thank you for sharing your experiences and challenges; it's understandable to feel overwhelmed given your medical history. Your journey sounds incredibly tough, and it's important to acknowledge how you feel about your recovery and mobility. Here’s a breakdown of some key points and actionable steps to help you navigate your current situation:

Main Points

1. You have a complex medical history with significant surgeries and persistent pain affecting your mobility.
2. Feelings of depression and lack of support are contributing to a sense of hopelessness.
3. You’re considering pursuing manipulation under anesthesia (MUA) procedures, but you need clarity on your current options and support.

Explanation

Your feelings of confusion, pain, and frustration are valid, especially after experiencing so many medical procedures. The pain and swelling you're experiencing can greatly impact your ability to engage fully in physical therapy. It’s understandable to feel apprehensive about returning to therapy given your past experiences, but taking small steps can help restore some hope in your recovery.

MUA is a procedure aimed at improving range of motion for patients with joint stiffness and may help if you're experiencing restrictive pain and immobility. Each person's case is unique, so it’s important to discuss this thoroughly with a healthcare professional who understands your medical history.

Prioritized Next Steps

1. Seek Support Services: Reach out to social services or support groups specifically for cancer survivors or individuals with chronic pain. Connection with those who understand your experience can be incredibly helpful. Look for local support groups online or consider virtual options if they’re available.

2. Document Your Symptoms: Keep a daily journal of your pain levels, swelling, and any functional limitations you experience. This can be useful for discussions with healthcare providers and while exploring treatment options.

3. Explore Pain Management Options:

   • Discuss non-invasive pain management techniques such as physical therapy, where the therapist can focus gently on your abilities and comfort. Request a therapist experienced with cancer recovery patients.
   • Consider consulting with a pain management specialist who can offer tailored strategies, including medications, physical therapy modifications, or other therapies.

4. Investigate Your Insurance: Contact your health insurance provider (Hoosier Care Connect Plus) to clarify the specifics of your coverage. Ask about what services are approved, including those related to rehabilitation and potential surgeries like MUA.

5. Schedule a Consultation: Find a new orthopedic surgeon or a rehabilitation specialist to discuss your concerns about your current situation, including the potential need for MUA. If necessary, ask if they can work closely with your oncologist for comprehensive care.

6. Evaluate Emotional Well-Being: Consider speaking to a mental health professional experienced in chronic illness. They can help address feelings of hopelessness, shame, and isolation, guiding you towards coping strategies for your emotions and pain.

Remember, it’s okay to take small steps towards recovery and to seek help along the way. You're not alone in this, and there are people and resources available to support you. Let me know how I can assist you further!