Jonathan Cowley

Prosthesis type: i-limb quantum
User since:
September 2015 (quantum)
Background:
tumor
Lives in:
Whittier, California
Occupation:
VP Sales & Client Services

Pre Op

It all began back in the beginning of 2013 when Jonathan found a lump in the center of his right palm.  At the time, it didn’t seem like a big issue as it caused no pain and his local doctor assured him that over 90% of the time lumps are benign and told him not to worry, but be vigilant of any change.

In retrospect, those words came back to haunt him months later during a Disney Cruise with his family. “My hand started getting quite painful and whatever the lump was, it was putting pressure on some nerves so a couple of my fingers felt ‘tingly’ and were turning blue.”

Upon the family’s return to Los Angeles, Jonathan went back to his doctor who immediately referred him to the UCLA orthopedic unit, more specifically to Dr. Kodi Azari. Upon inspecting the lump, Dr. Azari sent Jonathan for an MRI and within 3 days they had removed the lump which turned out to be a cancerous tumor.  The plan was to then go through the proper steps of getting a biopsy, hoping that everything had been removed, and then continue life as it was.  However, this was no ordinary case.  Instead the biopsy alone took 7 weeks as the sample was sent all around the country and ended up at Harvard University who ultimately gave the full diagnosis confirming that the tumor was an extremely rare epithelioid sarcoma. (Epithelioid sarcoma is a rare soft tissue sarcoma in young adults (20-39 year olds) involving the upper extremities 60% of the time.  In an analysis of a database on upper extremity sarcomas in the United States, the incidence of upper extremity epithelioid sarcoma was 0.1 cases per million per year.2)*

To ensure that Jonathan was in the clear, a second surgery was scheduled with Dr. Azari & Dr. Fritz Eilber (Director, UCLA Sarcoma Program) to achieve a clear margin around the tumor.  Unfortunately a follow up biopsy still showed evidence of the disease. Prior to performing a third surgery the surgeons chose to have Jonathan undergo a PET scan and a sentinel lymph node scan, typically administered to women with breast cancer, which confirmed that the disease hadn’t spread.  The third surgery then followed which resulted in Jonathan’s two middle fingers getting amputated and a V shape being cut in the palm and back of his hand to again create a clear margin.  However, this too didn’t solve the issue. 

The next step was to meet with the oncological surgeons at UCLA. Dr. Fritz Eilber and his father, Dr. Frederick Eilber then delivered some critical news. “Dr. Frederick Eilber walks over to me, holds my hand, and says ‘Jonathan, we need you to be around for your family, so there is only one option.’ So I said to him ‘When can we do this?’ And he said ‘Three days later.’ And that wasn’t a good move as we had just found out we were pregnant with our second child and this latest news caused my wife Michelle to break down into tears in the consultation room.” So, a week later, in March of 2014 Jonathan’s right hand was amputated to save his life.

Post Op

Luckily for Jonathan, he had been surrounded by an excellent team of doctors and surgeons.  

“Because it was not an emergency surgery they were able to amputate my hand in a position that they felt would be ideal for a prosthetic socket.”

During this entire process, he had continued to have conversations with Dr. Azari who had had success with Touch Bionics previously and was pro myo-electric devices.  They had discussed all the pros and cons and the plan was to be fit with a Touch Bionics prosthetic device post amputation.  Jonathan even happened to have a chance to travel to Scotland and visit the Touch Care Center where he had first-hand experience with the i-limb™ technology.

However, although the plan was solid, the surgery went well, and Jonathan was now ready to take on his new life he unfortunately experienced a hurdle many amputees face, rejection of the device.  In his case, it was due to losing volume in his residual limb which caused the socket to slip off.  For months his hand simply lived in his audio recording sound booth; that was until he happened to be on Facebook and came across a biodesigns sponsored ad showing another amputee wearing the HiFi socket.  Jonathan decided to reach out to the practice, who happened to be located nearby. After touring the facility and learning more about the socket designs offered there he immediately knew that this would be his solution.

“When I got fit with the biodesigns HiFi socket, that was the best thing that ever happened to me.  I now felt confident to wear my prosthesis every day. I wake up in the morning, put my hand on and then I take it off when I go to bed. It is now truly a part of me.  I don’t think of it as a prosthesis, it IS my hand. And I know it sounds corny but I looked in the mirror and the first thing I said to my wife when I first wore my new prosthesis was ‘Look. I’m whole again!’”

New Realities

Since then, Jonathan has been re-learning how to be right hand dominant again with the help of his i-limb™ quantum.

One of the things that Jonathan is very grateful for is the support he received from an employee assistance program provided by his wife’s company, British Airways.  He had met with several psychologists nearby but ultimately hit it off with a woman he chatted with over the phone who helped him leading up to his amputation.  One of the things she had him do was to write a goodbye letter to his hand while it was still intact. “Initially, I thought the woman was crazy, however I went home that night and ended up writing 13 pages with my hand that was still attached at the time, missing a couple of fingers.  I basically wrote 13 pages to say farewell.  I mean if you think about it, it’s a huge loss it’s like losing a relative.  I was losing my hand that had been with me for 42 years and we experienced so much together, so I did the right thing and basically gave my hand the sendoff it deserved.”

Today, Jonathan is continuing to have a positive outlook on his experience and likes to share his story all while staying as active as ever and enjoying his life to the fullest with his family!

Take a look at a recent video that highlights Jonathan's use of the i-limb™ quantum.

*Alderman, A.K., Kim, H.M., Kotsis, S.V. and Chung, K.C: Upper-Extremity sarcomas in the United States: Analysis of the Surveillance, Epidemiology, and End Results Database, 1973-1998. J of Hand Surgery, 28A: 511-518, 2003