Convincing A Surgeon

For a couple of years before my amputation, I tried a variety of treatments and therapies before making the decision to have surgery. When the time came to find a surgeon, I was surprised to be turned down by three because “You are so young and have my whole future ahead of you!” Their reaction was so strange to me because in my mind I thought “I am so young and have a whole life ahead of me AND this will help me live it to the fullest.” I had gotten to the point where I was no longer living my life, only surviving it – most of the time in a dark haze.

After my third rejection I decided to create a persuasive document that compiled both fact, experience and reason. I wanted the surgeon to see me as a whole person and not just an age. To truly understand how my then current condition was impacting my quality of life and mental health. The importance of them considering my situation and grasping the time, effort and research I put into this decision and that it was not made on a whim was crucial. Thankfully the fourth surgeon I contacted listened to my story and agreed to take me on as a patient if the doctor in the Physical Medicine & Rehabilitation department gave his blessing.

Here is a revised version of what I attached to my appointment request (removing names and other personal information). I truly believe that this letter and the attached lists are what got my foot in the door and changed my life. Maybe reading it will help someone out there struggling with this same decision.

Dr. A,

During our scheduled appointment on Jan 17th I would like to talk to you about having a BKA done by Dr. B. No need to respond to this message, I just wanted to give you a heads up regarding this conversation as it is very important to me. I know your team would be assisting with my recovery after the procedure.

I feel that by losing this limb I could regain my life. I am not disillusioned and recognize that there will be struggles. I do know that I already have many coping strategies in place to handle many of the challenges I will face. I am resilient and determined. They told me there was a good chance I may not walk again and if I did not without a walker. I have worked hard to get where I am and am fully prepared to do so again. If you would like to speak to my original physical therapist her name is PT C with Health Facility in City, WI (###-###-####).

The muscles in my left calf, ankle and foot are very weak and atrophied. I have sprained my left ankle multiple time, had several stress fractures in my left foot as well as pressure sores and ulcers on the bottom of my left foot. For the last nine weeks I have been on a knee scooter and/or crutches due to a pressure sore on the bottom of my left foot and being instructed to not put any pressure on it. When I get sick it also affects my ability to use my left leg in much capacity due to the regression of my foot and ankle muscles.

Professionally I am a software tester who works remotely from home, which will assist with managing my physical therapy appointments and easing myself back into work. Our house is fairly easy to navigate with assisting devices. It is a bi-level and has many open areas and wide hallways. I am not too proud to use any devices when I am feeling weak or off balance.

More than anything I want my quality of life back. I want to be able to walk without concentrating on each step and maybe look at the world around me. I want to interact and go on adventures with my daughter without constantly being on the sidelines. I want to be able to exist without constantly recovering from my left foot. I am 33 years old now and to go from running half-marathons to not being able to safely walk the dog around the block is devastating.

Thank you.

Things I have tried so far:

Physical Therapy
Occupational Therapy
Mirror Therapy
Sympathetic Therapy
Massage Therapy
Fluido Therapy
TENS unit
Acupuncture
Cupping
AFO
Ankle braces
Night splints
Stretching
Chiropractor
Contrast baths
Botox Injections

Reasons for amputation:

Current quality of life – will improve health, mobility, energy
Lack of predictable stability and control of left ankle, foot and toes
Visible atrophy of calf muscle
Remove risk of foot ulcers and osteomyelitis on left foot
My desired lifestyle would not suite a fixed/stiff ankle joint which could possibly introduce new pain sites and more nerve pain)
Gain the ability to live my life to the fullest and be present as a parent
Reduce stress of focusing on every move and danger and masking the strain it takes on me

Amputation pros:

Gain predictable instability by losing limb
Increased mobility and physical health (both from activity and reduced medications)
Possible decrease in medications and routine procedures (Botox, Baclofen, night splints) ● Conserve biological resources from healing from sprains, ulcers and stress
Ability to walk when I have a cold, cough or flu
I can return to active lifestyle without foot/ankle contortions which cause severe pain
Improved sleep without night splints, foot twisting inward from spasms
Will not sprain my ankle while swimming, turning in bed, biking, or walking
No more broken or bruised toes from putting shoes on, rubbing in shoes or stepping on them with the same foot to which they are attached

Amputation cons:

Time spent in hospital unable to assist at home with our child and dog
Recovery time without prosthesis (similar to the last 9 weeks)
Potential for phantom limb pain, neuromas, atrophy, contracture
Managing without nerve pain medications after surgery due to allergies
Possible intimacy issues with spouse
Allotting time for doctor and physical therapy appointments
Stress on my family (assisting me and worrying about me)

Preparedness:

Completed consultations with Prosthetist-Orthotist D & E
Spoke with podiatrist F
Open communication with an amputee similar in age and situation with children (A.K.)
House is arranged for recovery with open pathways, flat anti-slip entryway rug, etc
Devices currently owned: iWalk2.0 walking crutch, standard crutches, knee scooter, shower bench, cane, walker
Extensive research on process, recovery, challenges, risks
Strategies learned from when I was paralyzed from the waist down and had to learn to walk again

Goals:

Go on a walk outside and see more than the ground
Be able to be present and watch what my daughter is doing without standing still
Hike with our family at State Parks
Walk the dog around the block and further
Walk on grass or gravel without ankle brace and cane or person for support
Swim without severe pain, spraining or injuring my ankle
Run or jog again
To stop having to constantly focus on my left foot and ankle with everything I do.
To be present in my life as an individual, parent and spouse