OpenHealth Q&A

Seeking Help for Worsening Nerve Problems

Greetings! I apologize for the lengthy message, but there are numerous details I believe could be important, and I prefer to share more rather than less. **Summary**: I’m experiencing increasing numbness and tingling across my limbs, specifically affecting the left side of my left hand, the right side of my right hand, and my big toes. This deterioration is concerning, and I am looking for advice on potential underlying issues and how to ensure my concerns are warranted within the VA healthcare system. I am a 47-year-old transgender woman, and I began my transition four years ago, during which I've been prescribed Estradiol (2mg twice daily) and Progesterone (200mg daily). As a veteran, I am currently managing PTSD, nightmares, Generalized Anxiety Disorder, and Major Depressive Disorder with medications that include Wellbutrin (300mg daily), Escitalopram (20mg daily), and Prazosin (7mg daily). I occasionally take Trazodone (200mg) for sleep issues, though I tend to limit its use due to daytime grogginess. Navigating the VA healthcare system often feels like an uphill battle. In September 2023, while still serving, I began recovering from an illness when I suddenly experienced numbness in my left hand, particularly in the 4th and 5th fingers extending to the wrist. Initially, I didn’t think much of it, but the numbness evolved into tingling and discomfort, ultimately affecting my motor control and grip. My attempts to secure a referral to a neurology clinic resulted in a December appointment where, despite no diagnostic tests, I was prescribed gabapentin and referred for occupational therapy. Unfortunately, these interventions exacerbated my condition, preventing me from engaging in musical activities like playing guitar and piano, which were crucial for my mental health. The neurologist later prescribed two additional medications, but I found no relief. April 2024 brought some clarity when I finally underwent an EMG at a nearby Army base. The physician strongly advised that I required surgery immediately, cautioning that delaying could lead to irreversible nerve damage in my left hand. By this time, the tingling and discomfort had escalated to a point where sleep became elusive, and performing my teaching duties was increasingly difficult. The pain became remarkably distressing. My journey to consult an orthopedic surgeon took until May 2024, and I was met with refusal due to my medical board status. Despite presenting the EMG results as an emergency case, the surgeon dismissed my claims as my situation deteriorated throughout the summer. In July 2024, I found myself in a dark place, culminating in a suicide attempt. This was driven by numerous challenges, including my struggles with my left hand and the deterioration of my coping mechanisms for depression. Miraculously, I survived this episode, having reached out to my family at a critical moment. After years on the medical board, rushing was initiated in August 2024, which led me to a civilian orthopedic surgeon in September. I underwent an ulnar nerve transposition, all while facing discharge from the military after nearly three decades of service. The bureaucratic delays were frustrating, especially since my mental health had triggered a longstanding board status due to the use of antipsychotics in 2022. I have tried numerous antidepressants and alternative treatments without lasting success. Initially, the surgery yielded some improvement, but I soon noticed a regression in my left hand’s condition, which has since returned to its pre-surgery state, robbing me of my ability to play music or write comfortably. Additionally, I began experiencing numbness in my big toes and severe pain upon waking, along with tingling sensations. Although I raised these issues with the VA, my next appointment will not be until August. Recently, I’ve also encountered numbness and painful tingling in the right side of my right hand while using electronic devices. After securing a referral through the VA, I returned to the previous surgical center for testing, which confirmed my left arm and hand had myelin damage. They suspected that scar tissue from the earlier surgery may be compressing the ulnar nerve, prompting them to schedule another ulnar nerve remedy for July 1st. I expressed my concerns about my right arm and toes, but the surgeon seemed dismissive and vaguely mentioned contacting a neurologist—though I remain skeptical of how effective that will be within the VA framework. Thank you for taking the time to read my lengthy account. I welcome any insights or suggestions on potential underlying causes and ways to advocate effectively within the VA system. The ongoing struggle to use both hands for essential functions is deeply concerning, and the thought of losing capability in both is frightening.

Answers (1)

6/23/2025, 10:00:52 PM

OpenHealth AI

I'm truly sorry to hear about the difficult experiences you've been through with your nerve condition and mental health. It sounds incredibly challenging, and I appreciate your openness in sharing your journey. Based on your symptoms, the history provided, and the context of your VA healthcare encounters, there are several important points to consider:

Main Points:

1. Nerve Damage and Compression: Your symptoms suggest possible nerve damage or compression, particularly from the ulnar nerve and potentially others.
2. Mental Health Impact: The chronic discomfort and disability from these conditions can significantly affect your mental health. Your previous history with depression and PTSD must be acknowledged as well.
3. Advocacy for Care: It’s crucial to be persistent in advocating for your health and ensuring your concerns are taken seriously within the VA system.

Explanation:

Numbness and tingling in your limbs can arise from various issues including nerve compression (such as ulnar nerve compression), peripheral neuropathy, myelin damage, or systemic conditions like multiple sclerosis, thyroid disorders, or rheumatologic issues. Given your history of surgeries and their outcomes, the regression you experienced post-surgery can occur due to factors like scar tissue formation.

The pain and tingling in your toes may suggest a separate issue, potentially involving the lower extremities. This might reflect peripheral neuropathy or issues related to circulation or nerve compression in the lower limbs.

Actionable Next Steps:

1. Follow Up on Surgical Concerns: Given that you’ve been scheduled for further intervention regarding your left-hand ulnar nerve, continue with that plan. Ensure you convey all your symptomatic changes and concerns, especially about your right hand and toes, to the surgical team clearly. Documenting each symptom can be helpful for discussions.

2. Request a Comprehensive Neurological Evaluation: Ask for a referral to a neurologist specifically trained in nerve disorders. A thorough evaluation, possibly with an MRI or additional nerve conduction studies, could provide more insights. It’s okay to express your concerns if you feel previous referrals haven’t given you adequate results.

3. Manage Pain and Symptoms: Engage in pain management strategies while awaiting further assessments. You might find relief through:

   • Physical and Occupational Therapy: Continue with therapy focused on improving function. Discuss with the therapist about specific exercises to help maintain mobility and reduce discomfort.
   • Topical Treatments: Conservative approaches like lidocaine patches or topical analgesics could help alleviate symptoms locally.

4. Mental Health Support: As you navigate these physical challenges, consider reaching out to mental health professionals who can assist you with coping strategies. Since you’re already managing mental health conditions, integrating therapy focused on managing chronic pain may be beneficial.

5. Advocate Assertively: When communicating with healthcare providers, emphasize the urgency and impact of your symptoms on your daily activities. Exploring VA patient advocacy resources can also assist in ensuring you receive necessary care and follow-ups within an appropriate timeframe.

Please prioritize your mental well-being alongside physical recovery and don’t hesitate to ask for help from family, friends, or local support groups. You are facing a complex situation, but with persistent advocacy and comprehensive care, there’s hope for improvement. Let me know if you need more specific information on any of these suggestions.