Jon Jones's elective amputation

Hello.  I am Jon Jones.  I have been disabled for 22 years and advocate that independence is the key to living a rich fulfilled life despite the challenges of having a disability.

That being said, please understand I have to fight my instinctual pride making this gofundme campaign.  I made a brave choice this year in a bold effort to live a better life, elective amputation.  


     I have suffered from a spinal cord injury for 2 decades.  The condition did not leave me completely paralyzed. Yet my right side was quite compromised.  While much of the use of my left side returned within the first year, my right hand, right arm, right leg never returned to a fully functional state.  Rather than focusing on what I can’t do since my accident, I have spent over 20 years concentrating and improving what I can.   Although I began this journey completely paralyzed from the shoulders down, I never once doubted that I would walk again.  It took time, a lot of work, and all my will, but I have lived most of the last 20 years independent of a wheelchair.  I managed to walk with the assistance of orthotics and forearm canes at first.  Eventually I dropped the canes and even the orthotics for a time and was able to hike my straightened right leg forward in what I dubbed my, “zombie walk”.
                                           
Here's rare video of my old "zombie walk"


     Over a decade of walking like this and continuing to pursue an active life caused me countless injuries from falls and destroyed my right knee.  I had to have shoulder surgery in 2013 and something finally awoke in me. I decided to get healthy and try to reach my full physical potential before the aging process made it any harder to do.  After a few years of ever increasing health and abilities I came to the realization that my right leg was holding me back.  While designing a new brace with an orthotist that would encompassed my entire right leg, I began to think about elective amputation.  A little over a year later I was scheduled for surgery.  It has been 7 months since surgery and I am happy to say I can already walk better, easier, more naturally on my prosthetic than I have in 22 years.  And I am not in constant pain anymore.

                                   

     It has been an amazing journey although an expensive one.  I am more than grateful that Medicare has covered 80% of almost all my medical bills and prosthetics costs, but my 20% has tallied up to $18,000 so far.  The year of research I did in order to make this life changing decision did include learning what the procedure and prosthetics would cost approximately.  I did and still do think it’s worth it.  I have already been making payments and have been willing to live with and work on this debt.  After hearing the expense of 9 months of physical therapy, a *new wheelchair and  **second prosthetic knee, my friends and supporters have encouraged me to ask for help through a gofundme campaign.  

*when not wearing my prosthetic I am dependent on a wheelchair
**a MicroProcessorKnee (MPK) will prevent the many falls I have now on my poly centric mechanical knee


    As I have begun returning to my life and started making payments towards my almost $20,000 medical debt, I am realizing I will be limited to paying off these debts for years much like I focused my time and energy the last two years on training and preparing for my elective amputation.  I have accomplished so much in this elective amputation, but especially this year it has required all the time, energy and money I have. There hasn't been time or resources for much of anything else. No matter how much one plans, life still throws things like dentist bills and car repairs at us all the time and this is where I find it gets difficult.  The success of this campaign would mean I could completely pay off my $2000 hospital balance, my $3000 physical therapy bill and almost cover the over $10,000 in prosthetics costs I have acquired this year.  I could get to living this new more capable life I dreamed of when I first came up with this radical solution, now reality.

Thanks for taking the time to read this. I know your time is valuable and if you feel motivated to, please share my story.  And if your generous enough to donate, please know it is greatly appreciated.

You can read more about my story below. Being that my gofundme story starts 22 years ago it was a true challenge for me to summarize it above.

I wrote the following in response to a journalist for a magazine article about my elective amputation:


      In 1996 I was involved in a car accident that broke my neck.  Three of my cervical vertebrae were fractured and bone fragments pierced my spinal cord resulting in what's called an incomplete spinal cord injury.  At first I was completely paralyzed from the shoulders down and when I began my rehabilitation, a doctor told me I would never walk again. I never once believed that.  It took almost a year but contrary to his expectations, I made it out from between the parallel bars with the aid of orthotics on my right leg and two forearm canes. 

     The spinal cord injury effected me in many ways. The most apparent was it's effect on my right leg. My right leg wasn't paralyzed, numb and limp.  Rather my right leg was in constant spasm or flexed out straight, knee locked, pointing my toe like a calve cramp. In order to walk orthotics were made to stabilize my knee and force my foot into a 90 degree position.  My walking was limited but possible by hiking my straightened right leg and eventually I stopped using any canes, but the orthotics were painful. My leg and foot fought the braces constantly. With the braces off, the leg was free to flex itself into what felt like a contorted cramp. There was no relief. In addition to the chronic pain from my SCI, two decades of walking with an unnatural gait, damaged my knee and caused countless injuries from falls. 
                                                                                                             
    Here's rare video of my old "zombie walk"                                                                                                         

     In 2013 I had shoulder surgery and the following physical therapy triggered something in me. A strong desire to be better. I became a gym member and continued physical therapy on my own.  In my follow up appointments for my shoulder my doctor convinced me to commit to my health and diet as I had to my new workout regimen. As I maintained this healthy lifestyle, my strength, stability & mobility increased. Yet my right leg still limited both the distance and the terrain in which I could walk and I lived in constant pain.
            
     Around 2 years ago I realized how severely my right knee was hyperextending from a decade of walking without any orthotics. I had to return to wearing orthotics or I would require a knee replacement sooner than later. The frustrations I experienced while working with an orthotist on a new KAFO, led me to have this thought.
"Essentially an orthotic manipulates a compromised limb to function similarly to a prosthetic. Modern prosthetics far out perform my SCI effected right leg even with the assistance of my painful orthotic.  So I began asking the question, why don’t we eliminate the compromised limb part of the equation? "
                     
     I first presented my elective amputation idea to my orthotist and he was very much against the idea, but still he referred me to the reputable Dr. Gajewski.  In our first meeting he provided me with a clear understanding of the procedure and why a knee disarticulation would be the best form of elective amputation for me.  He also humbly expressed his own reservations about how many unknowns existed because of my spinal cord injury and suggested I continue my research before making a decision.  



     I understood this was a radical solution and it would broadly effect my life in a permanent way, so I began speaking to medical professionals from multiple fields in the Asheville area. My discussions with the surgeon, physical therapists, my doctors and neurologists provided me with a lot of information but also many varied opinions. No one could predict how my spinal cord injury would effect the proposed knee disarticulation. I traveled to Duke to discuss elective amputation with a rehabilitation doctor who specialized in both SCI and amputation. To my surprise the doctor had gathered a team of Duke staff members consisting of an orthotist/prosthetist, a physical therapist, and a neurologist to be part of our conversation. At the conclusion of that meeting the group was aligned with my optimistic perspective versus the cautious and fearful opinions that were expressed to me. During the approximate year and a half of researching prosthetics and talking to medical professionals I also talked to amputees and found valuable resources online. 

The Amputee OT is extremely informative about "amplife".

     My decision was made and all that was left to do was set a date for surgery. In order to choose the right time to put my entire life on hold I felt a need to know what the post surgery days, weeks and months could be like.   I had been directed to CarePartners by my orthopedic physical therapists at Asheville Family Fitness because they wanted someone whose expertise was spinal cord injuries and amputations to oversee my rehabilitation.  In January 2018 I made an appointment with CarePartners to get my questions answered. I met with Laura Dylus and she astounded me by digesting my 20 year SCI history and my goal of an elective knee disarticulation in the twenty minutes it took me to put it in words.  After our discussion she examined me and immediately she saw how she could prepare me for surgery and reach my goal of a natural gait on a prosthetic. Laura directed me to start doing PT twice a week and she would work with me after surgery.  Before I left CP Outpatient that day I was scheduled to work once a week with Laura on gait training and once a week I was in the pool with Ellen for core strengthening. 

     I began my physical therapy with CarePartners Outpatient two months before surgery while maintaining a workout routine at Asheville Family Fitness on my own. I had no idea the referral to CarePartners would lead me to a physical therapist who stood out as much as I do as a patient. I asked Laura after only working with her for a short time, if I would be able to jump rope on one leg and her answer was to show me this the Rio Paralympic 2016 Trailer / We’re The Superhumans. 


It is a mind-blowing 3 minutes of people with disabilities performing a myriad of amazing feats.  That says a lot. Laura has consistently matched or surpassed my optimism and enthusiasm. I have worked with many very good physical therapists in the two decades with a spinal cord injury.  Laura Dylus is the best.  It is Laura’s ability to analyze my gait to choose the best physical therapy techniques or originate and her capacity to communicate the complex the art of passive walking that enables me to progress at an amazing rate.  Doctors told me I shouldn’t be able to walk.  Laura reminds me my goal is to run.  I couldn’t have dreamed of a better guide through this.

     My team was complete once I met with Jeremy at CarePartners Orthotics & Prosthetics.  In our first appointment Jeremy gave me an approximate timeline for my recovery and my transition into amputee life with a prosthetic leg. He also assisted me by explaining the financial aspects as the prosthetic would surely be the heftiest of the part of the financial burden I was taking on.  Again, the more understanding I could attain the more secure I could feel deciding to have my leg cut off and how this decision was going to effect my life financially was a significant concern. As my prosthetist, Jeremy recognizes how the complexity of my spinal cord injury creates problems without precedent yet consistently solves them with his expertise.  Adapting to walking with a prosthetic is a long process, so is adapting a prosthetic to you.  It requires weekly adjustments through the beginning months and Jeremy and the rest of the CP O&P staff have always been more than accommodating. 

     Every session at CarePartners, Laura and Ellen fed me more and more information about the challenges I would face as an amputee as well as physically prepare me for them. I also learned as much as I could from The Amputee OT on YouTube, an occupational therapist who had an elective amputation after an accident severely damaged her foot. Through her YouTube channel she shares her experience from a therapist’s and a patient perspective and educates whoever desires the information of what life is like as an amputee. An orthotists/prosthetists introduced me to a woman on social media who was the only other case of an ambulating SCI electively amputating a leg for a better life on a prosthetic. I gained an enormous amount of confidence from following their stories and both of them surprised me by being personally supportive.  I believed the more informed I was the more secure I would feel in my decision. Around a year after I first began my research, I had to face it. I was as ready as I was ever going to be.


     The elective amputation was performed on March 23rd.  Couple of weeks before surgery I got a cut here tattoo on my right leg exactly where I thought the first incision would be. With due respect to Dr G, I wasn’t telling him how to do his job.  I very much wanted to know the right leg would be amputated. After my tattooed punchline got a good laugh in the operating room, Dr. Gajewski removed my lower right leg (tibia, fibia and foot) while leaving my entire femur intact in a procedure called a knee disarticulation.  This form of amputation is rare but optimal in that it heals more rapidly and the surgeon constructs a more practical residual limb ideal for weight bearing. Elective amputation differs from most amputations because the surgeon is in control of so many factors versus reacting to a traumatic accident. I was released from the hospital within days and was at CarePartners Outpatient for PT within a week.



    Amputation hurts. Not like Civil War amputation hurt, but still. It is really painful. In my online research I discovered Youtube videos of amputees sharing their experiences, so I was informed, but not prepared.  I learned about phantom pains and listened to amputees describe them and still could never have imagined the suffering. The first three weeks were intensely difficult. The pain and general stimulus of surgery set off SCI muscle spasms worse than I had experienced in the first months of my spinal cord injury.  My right leg or what remained would kick, bounce & hop relentlessly.  A friend said it was like a hyperactive puppy hopping for attention. Adorable, but this was torture. Every spasm pulled and jerked on my freshly reconstructed tissues. There would be rare moments of rest, maybe 5 to 10 minutes at the most. That lasted for 3 weeks.  I rarely slept.  Exhaustion would overcome me and I would fall asleep for barely an hr or so a few times a day but every night was the worst. My residual limb either hopped out of control from the post surgery pain or from the intense phantom pains, each spasm causing the healing tissues to hurt as well.  The only relief for my phantom pains came from mirror therapy until Dr. Diez prescribed me gabapentin.  As for the spasms only time to heal would alleviate them.

     Both my father and wrestling instilled in me the way to attain your goals is through disciplined hard work. I prefer to take on life’s challenges proactively. Forcing myself to simply rest and heal when I wasn’t in physical therapy was difficult. I had to be reminded walking with a prosthetic was my goal and my residual limb needed to heal in order to start that process. A fall or overdoing it would cause nothing but setbacks. So with an incredible amount of help from my community I stayed on the couch and in my wheelchair.

     Prior to surgery I was concerned for my mental health. I thought. surely I would get depressed. I had spent the last few years training hard to improve my abilities with doctor defying results. After 2 decades of improvement how would I react to being back in my wheelchair? Turns out being in my wheelchair isn’t so bad. The years of dedicating 3 days a week to strength training made returning to my 21 year old wheelchair a much better experience than it was the first year of my SCI. Immediately simply standing was easier on one leg. Being able to stand made transferring to my wheelchair a breeze.  The core training I had been doing also changed my posture in the chair and I furthered this by forcing myself to stay engaged and never slouch in my chair.  I did not have nearly the upper body strength I do now when I was in my chair full-time that first year after my accident. After dragging my right leg around for 20 years, I felt so much more nimble.  I discovered speeding around in my wheelchair was something I had been neglecting myself. It’s fun. When I rolled into The Rehab Institute of Chicago in 1996 a Dr. Nussbaum told me I would never walk again.  I never believed him.  I never doubted I would walk again.  I made it my goal to get out of my wheelchair permanently. So much so for the last twenty years I have resisted using it when it was the proper thing to do. Resulting in countless unnecessary falls.  Oops.  I now know and accept as a guy with an asymmetrical SCI body and one and a half legs, my wheelchair is a major part of my life.  Without my prosthetic it’s just me and that chair. After decades of beating myself up physically and mentally, I finally appreciate how great a wheelchair is and the independence it provides. I adapt. Slowly, but I adapt. 

      I appreciated the enormous amount of support I received from my community, but I knew it wouldn’t be until I started transferring my chair into my car and driving myself around that I would feel back in control of my life. Two weeks after surgery I stopped my pain medication and started driving myself to physical therapy and prosthetics appointments.  I adjusted to my life in my wheelchair as my leg healed and Jeremy guided me through the prosthetic process.  Physical therapy was mostly focused on pain management and maintaining my flexibility at first. The pain and lack of sleep was taking it’s toll on my morale but my entire CarePartners team aided me with encouragement, empathy and did all they could to help me find ways to sleep and rest through my recovery.


     Precisely one month after surgery I was standing on a prosthetic leg.  I haven’t been that happy since I first stood after my spinal cord injury.  The years of training and months spent gait training with Laura made it possible for me to take my steps within moments of standing on a prosthetic leg. Those first steps moved me and every step towards a more normal gait is an emotional one. I see weekly results as I continue my physical therapy with Laura and every day has moments in which my new stride gives me so much joy.  I concentrate on improving my gait with every step I take and I feel extremely confident that my rate of progression will continue until my goals are met and new ones are set.

      I spent almost 20 years accepting and adapting to my spinal cord injury. I never doubted myself in my ability to still have a life of fulfillment despite my challenges. I had lost hope that science would find a way to heal spinal cord injuries while I was young enough to benefit. Amazingly the key to a better life for me was to be discovered in world of prosthetics. Jeremy is currently putting together my case for a MPK or microprocessor knee. It sounds like science fiction that prosthetics have evolved to a point where I have actually traded the leg I was born with for a superior robotic prosthetic. The radical solution I proposed to my orthotist almost two years ago is now my reality. 

My first test run on the Plie' 3 MPK by Freedom Innovations



Local news did a story about my elective amputation.
You can watch it here from this link 
Although there are two corrections I must make to this news story:  Jay Siltzer in his narration says I was "dependent on my wheelchair and constantly tweaking and repairing it", actually I was repairing my 22 year old wheelchair in preparation for after surgery.  Because of how my two decade old spinal cord injury effects my upper body I knew I would become dependent on a chair  after having my leg amputated.  I had been using orthotics to walk for 21 years and rarely used it since the first couple years after my accident.  Although I have a prosthetic now, I am dependent on my wheelchair when I am not wearing or cannot wear my prosthetic.  Also at the end of the tv segment the news anchor says,"Jones insurance paid for his amputation and his prosthetic". Medicare thankfully paid 80% of my medical bills and I am responsible for the remaining 20%.  That 20% has added up to $18,000 in this first 8 months as an amputee. Hence, gofundme.