Ten Resources for People with Limb Loss  

You deserve to have as much information as possible to address pain associated with limb loss, either existing or anticipated due to a planned amputation. TMR Nerve delivers information about the option of Targeted Muscle Reinnervation (TMR) surgery to help alleviate nerve pain associated with amputation. 

When a limb is amputated, the remaining nerves continue to grow, though they are disconnected from the amputated limb. Since they have nowhere to go, they can form into a painful neuroma. If you think about nerves as electrical wiring, TMR helps to complete the ‘circuit’ by reconnecting the ‘live wire.’ During a TMR procedure, surgeons reroute amputated nerves by attaching them to other nerves in nearby muscles. 

We strive to provide resources for potential patients, their healthcare partners and their families. A good place to start is our Patient Resource page, but there is so much more information out there. The online landscape can be overwhelming and difficult to navigate. 

The following is curated from resources posted by our friends at the Amputee Coalition* and other organizations.

Ten Useful Resources for Amputees

1. The Amputee Coalition’s Largest Survey of People with Limb Loss and Limb Difference (PwLL/LD)
   

   Conducted from 2021-2022, the survey revealed three key findings and opportunities to address the unmet needs of people with limb loss and limb difference: 

   • A need for assistive technologies
   • Better understanding of accommodations and benefits for individuals with disabilities
   • Improved integrated physical and mental healthcare. 

   According to a press release announcing the survey, “Until recently, little was known about the more than 2.1 million PwLL/LD and their challenges accessing appropriate and quality care.”   Survey respondents reported challenges accessing various health and support services including:

   • 55% Techniques for better sleep
   • 49% Comprehensive care services
   • 48% Peer support groups
   • 40% Rehab services
   • 38% Non-opioid pain treatment

   The full Largest Survey of People with Limb Loss and Limb Difference results can be downloaded for a deeper read. 

    
2. Cosi Belloso’s dedication to working with amputees started during her formative years working as a newly-graduated PT under the mentorship of Curtis Clark at Jackson Memorial Hospital (JMH). Whether you’re fresh out of surgery or a veteran amputee, there is always something new to be learned on her Cosi Talks website. 
3. Learn about the services the National Limb Loss Resource Center (NLLRC) provides from NLLRC specialist Aaron Burnell in this free webinar.
4. Abled Amputees is a website for education, inspiration and support and is a place to apply for PT/OT financial assistance.
5. There are a range of camps open to children of all ages and abilities. Camp Open Arms was founded by Joshua Abzug, MD, a pediatric orthopedist at the University of Maryland School of Medicine who works with children with limb loss and limb differences. A partial list can also be found at Camps for Children with Limb Loss/Limb Difference. 
6. The Amputee Coalition celebrated LGBTQIA+ Pride Month offering a webinar to learn more about resources available for the LGBTQIA+ Community Living with Limb Loss and Limb Difference and how you can be involved: Resources Available for the LGBTQIA+ Community Living with Limb Loss and Limb Difference
7. A discussion about the benefits of becoming a lead advocate and how to talk with local lawmakers and change policies is covered in this webinar, Advocacy 101. 
8. A list of frequently requested resources in each state is displayed as an interactive map on Amputee Coalition’s website.
9. Mission Gait seeks to change forever how rehabilitation is provided to patients with complex gait disabilities. The roadmap to get there is as unique, simple, and effective as the model it promotes. Their mission is to empower the physical rehabilitation community, through education and research, to help patients with complex gait disabilities learn to move again with confidence. Mission Gait strives for a world in which physical therapists everywhere can acquire the knowledge and skills to help patients with complex gait disabilities achieve the rehabilitation goals that matter the most to each patient.
10. This TMR Nerve patient education pamphlet covers the basics for those interested in learning more about TMR surgery. 

This list is by no means comprehensive, but as with most research, it’s helpful to have a place to start. Sometimes it's helpful just to read about the experience of others who have experienced limb loss. Take a look at our patient stories and our blog for information to help you in your journey. 

*It is not the intention of the Amputee Coalition to provide specific medical or legal advice but rather to provide consumers with information to better understand their health and healthcare issues. The Amputee Coalition does not endorse any specific treatment, technology, company, service or device. Consumers are urged to consult with their healthcare providers for specific medical advice or before making any purchasing decisions involving their care.