Important Context: We need to emphasise that I am not a doctor and this is based on lived experience following a 10 hour orthopaedic foot reconstruction and extensive research.
    CMT Recovery
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    Long-Term Strategy

    Life After CMT Surgery: Managing VTE Risk and Mobility

    My surgical recovery isn't just about getting back on my feet; it's about altering my long-term health trajectory. Here is the blueprint for preserving mobility against the progression of Charcot-Marie-Tooth disease.

    Last updated: 27 May 2026

    The Weight Reduction Goal

    My ultimate post-recovery goal is to safely reduce my body weight to around 85–90kg over the next 12 to 18 months.

    VTE/PE Management

    Dropping excess weight is the single most powerful lever I have to reduce my risk of future blood clots following my Pulmonary Embolism history.

    The Intersection of CMT and Weight

    Carrying excess weight places a massive, compounding burden on feet that are already structurally compromised by Charcot-Marie-Tooth disease. When your peripheral nerves are failing and your muscles are atrophying, every extra kilogram of body weight increases the mechanical stress on your joints.

    Following a 10-hour orthopaedic foot reconstruction—where bones were re-cut, tendons were transferred, and the entire architecture of my foot was rebuilt—taking the mechanical stress off that newly reconstructed foot is paramount. The less weight those fused bones and transferred tendons have to support, the longer the reconstruction will last.

    The Golden Rule of CMT Preservation

    Preserving mobility against the progression of Charcot-Marie-Tooth disease requires optimizing what you can control. We cannot control the genetic nerve degradation, but we absolutely can control the load we place on those weakened structures.

    Mitigating Future Blood Clots (VTE/PE)

    Having a history of Venous Thromboembolism (VTE) and Pulmonary Embolism (PE) means I live with a constant, underlying risk of recurrent clots. While anticoagulant therapy (Apixaban) is my primary medical defense, systemic inflammation and obesity are massive independent risk factors for clotting.

    By reducing my weight to the 85-90kg range, I am actively lowering systemic inflammation, improving vascular health, and drastically reducing my baseline risk of another PE. It’s not just about aesthetics; it is a life-preserving medical strategy.

    VTE-Specific Exercises and Monitoring

    While bedbound or in a moon boot, the risk of deep vein thrombosis (DVT) in the legs is exceptionally high. Because my foot was immobilized, the natural "calf muscle pump" that returns venous blood to the heart was disabled.

    To counter this, I incorporated specific, safe movements to keep blood flowing, even while strictly resting:

    • Non-Operated Leg Activations: Frequent ankle pumps, heel slides, and straight leg raises with my "good" leg to maintain systemic circulation.
    • Upper Body Ergometer / Resistance Bands: Using light resistance bands for upper body workouts while seated or lying down to elevate heart rate safely.
    • DDP Yoga Rebuild: Adapting bed-based yoga movements to maintain core strength and flexibility without loading the surgical foot.

    Critical Signs to Watch For (VTE/PE)

    Even with Apixaban and movement, vigilance is required. Seek immediate emergency medical attention if you experience:

    • Sudden, unexplained shortness of breath or rapid breathing.
    • Chest pain that worsens when taking a deep breath or coughing.
    • Coughing up blood.
    • New, unexplained swelling, redness, or heat in the calf or thigh (especially the non-operated leg).

    Why I Built This Platform

    Navigating the intersection of CMT, major orthopaedic surgery, and anticoagulant therapy was incredibly difficult. The standard advice for one condition often directly contradicted the safety protocols for the other (like taking natural anti-inflammatories for surgery that could cause fatal bleeding due to blood thinners).

    I want to share the nutritional and planning blueprints that helped me through it. By documenting my daily consumption schedule, protein pacing strategy, and long-term goals, I hope to provide a roadmap for others facing this daunting intersection of complex medical needs.