Jen’s Story

Site created on March 16, 2022

Jen has been battling poor health for well over a decade. It started with a Traumatic Brain Injury in April 2010 followed by a rupture of her L5S1 in June 2012 that left her with Dropfoot due to delayed back surgery. But as “typical Jen,” she refused to accept what doctors insisted: A life with permanent Dropfoot. She sought out a doctor doing an experimental Dropfoot-reversal surgery. And just before Christmas 2013, she underwent a successful, anterior tibial tendon transfer that reversed her Dropfoot (this was also the start of Jen’s desire to share her struggles on YouTube in hopes of helping others to find guidance during scary/uncertain times ( https://youtu.be/hOklOhhNPnQ  (https://youtu.be/hOklOhhNPnQ ) (https://youtu.be/hOklOhhNPnQ  (https://youtu.be/hOklOhhNPnQ )).



Several years of Physical and Cognitive rehab after her TBI, Jen moved with her mom to York, PA, in 2014 to resume her college career. She walked across the stage in May of 2017 with a 4.0 GPA in Professional Writing (Speech Comm. Minor).


Shortly after graduation, Jen shattered her left heel, leading to a botched surgery (which turned into 11) and the Chronic Pain condition that has led to her amputation. During an 18 -month-period, Jen underwent revision after revision of her foot with several fusions. Her life and surgical recoveries were increasingly painful (to the point where she could not move for weeks, and neighbors called after hearing her screams). It was only after this looooong period of agony, watching her foot and leg turn black, and a variety of other odd symptoms that she was diagnosed with RSD/CRPS aka the “Suicide Disease” (because it is the most painful condition ever documented).


Unfortunately, the same Pain Management doctor who diagnosed Jen, also nearly ended her life in Oct 2019 with a Sympathetic Nerve Block  (a procedure that we later learned can be lethal to CRPS patients). She spent 10 days in Hershey Med acute care where they tried unsuccessfully to control her pain. The Sympathetic Block the had spread the CRPS from her left foot/lower leg to her entire body from the chest down leaving her in constant agony despite being maxed out on pain medications. She then spent 3 weeks at an inpatient rehab before returning home unable to do the simplest of tasks.


Next came a successful Spinal Cord Stimulator Trial in Jan 2020 followed by a permanent implant in Feb 2020, a failed Peripheral Nerve Stimulator experience, and a successful DRG Stimulator Trial in June 2020 followed by a permanent implant in July 2020. All of her stimulators have worked in tandem with pain medication to provide significant relief (although not nearly as much to the original CRPS location) since then.


This past October, Jen’s CRPS took a turn for the worse as the “flares” in her foot became more intense, lengthy, and destructive. She has been literally burned alive from the inside out a completely bed-bound since January. A few weeks ago, after all attempts to salvage any quality in her foot failed, Jen made the decision with her well-trusted Foot & Ankle surgeon up at Hershey Med to undergo a Trans-tibial Amputation of her left leg on March 18. While the surgery is termed “elective,” all medical professionals and those who see Jen’s day-to-day struggles agree that this is necessary.


Jen has made it her mission in life to support all she meets (especially those in the Spinal Cord Stimulator and Chronic Pain Communities). From this was born a YouTube Channel “The Will to Walk” ( https://youtube.com/channel/UCkOkcKSmwHWR_c6PL06bNMA  (https://youtube.com/channel/UCkOkcKSmwHWR_c6PL06bNMA ) (https://youtube.com/channel/UCkOkcKSmwHWR_c6PL06bNMA  (https://youtube.com/channel/UCkOkcKSmwHWR_c6PL06bNMA )) as she never wanted anyone to “walk alone” through their medical or chronic pain journey as she had at many times along her own  path.  She also uses the channel to provide information about CRPS, the SCS Process, comparative info about all stimulators, and a look into life as a Chronic Pain Patient. 


She also started a Facebook support group titled “Spinal Cord Stimulators: Sharing, Supporting, and Educating”  ( https://www.facebook.com/groups/455627465875338/  (https://www.facebook.com/groups/455627465875338/ ) (https://www.facebook.com/groups/455627465875338/  (https://www.facebook.com/groups/455627465875338/ )) with the goal of not only providing a safe space, non-judgmental space where patients can share their frustrations and victories, ask questions, reach out for advice, enjoy a sense of comradery, and obtain the knowledge necessary to make informed decisions about their health. Essentially, Jen gives any energy she does have to running her channel and support group, moderating other groups, and supporting fellow pain warriors through online and phone conversations, letters, uplifting gifts, care-packages, and more. She genuinely loves and cares for all who cross her path.



Thank you all for following and supporting Jen through what will likely be her most difficult challenge yet. Your outpouring of love and and prayers mean the world to. She is ready to move onto the next chapter of what has been such a difficult life.



Newest Update

Journal entry by Ruth Hindley

The last few days have been rather uneventful aside from trying to keep Jen’s pain in check. She had her first at-home Physical Therapy appointment yesterday and surprised us all with her strength. Jen over-did things a bit so was in a good deal of pain, but we were thankfully able to get things under control in time for bed.

Jen has been spending much of her time trying to find resources to help with her recovery both physically and emotionally. When she decided to go with the Hanger Clinic to have her prosthesis made, she discovered a whole host of resources on their website. She signed up for a large amputee peer network sponsored by Hanger called AMPOWER and received a call from her mentor yesterday. She was an incredible woman who works for Hanger in Tennessee and has been an amputee for over 40 years. Jen is excited to have someone who can really guide her through these early days/weeks/months of recovery.

One issue that we’ve been having since Jen got her stitches out is that her stump cast/protector keeps moving around and is rather uncomfortable. She has also been struggling to remember to keep her leg/knee straight (a MUST when it comes to being able to walk well in the eventual prosthesis). Wondering why there wasn’t something out there to both protect her stump and keep her leg straight, she remembered seeing something on the Hanger Clinic website that did just that. After speaking with her prosthetist and medical team, everyone agreed that this would be a great thing for Jen to have. So a script was written and faxed over for an “AmpuShield,” which Jen is hoping to get sometime next week.

Aside from that, we are just keeping things quiet. Rest is such an important part of the healing process, so aside from phone calls and short visits from friends, Jen is sleeping a lot and enjoying long naps on the futon with Krieger. Please pray that all goes well with getting the AmpuShield this week, as it will make a huge difference when it comes to Jen’s recovery and overall comfort.
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