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Established in 1991, the FES Center is a consortium with three institutional partners: Cleveland VA Medical Center (CVAMC), the private educational institution of Case Western Reserve University (CWRU), and the public hospital system of MetroHealth Medical Center (MHMC). Read more...

 


Follow the journey of Jen French, Cleveland FES Center research participant, in her "Stand by Me" journal. Jen participates in the Stand & Transfer Program for Spinal Cord Injury and received an upgraded FES system for trunk control and stand/transfer.

This site contains journal entries from Jen during her pre-surgical preparation, surgery, recovery and rehabilitation with intermittent comments from the clinical team clarifying Jen's progress and experience.

Although this site is hosted by the Cleveland FES Center, Jen's Journal is her own.

 

First Entry

July 19, 2010

Twelve years ago I sustained a spinal cord injury from a snowboarding accident. This accident left me a quadriplegic. To say the least, it was life changing.

Eleven of those years post-injury, I have been using a stand and transfer neural prosthesis. This is an experimental device and I am the first woman to receive such a system. It consists of implanted electrodes to my paralyzed muscles and an external control device. Using this device on a daily basis has afforded me the ability to keep the paralyzed muscles healthy while combating medical complications common among people living with spinal cord injury such as pressure sores, spasticity and muscle atrophy. The FES system has given me alternatives to my wheelchair by enabling me to move around short distances with a walker. I have had unique experiences with the system which would be considered 'impossible' upon my initial diagnosis: the ability to stand at the seventh inning stretch, standing to hug a loved one and walking down the aisle at our wedding. I have integrated this technology into my daily life and have become accustom to its benefits.

Read more: First Entry

   

The Current Standing System

July 27, 2010

The questions have surfaced: Why a new system? What will the new system do? To answer these questions, let's first establish the baseline. What is the system that I currently use?

The first generation of the Stand and Transfer system is really a hybrid system consisting of implanted components and external components. In the world of medical science, we have been implanting devices into humans for decades; like the heart pacemaker or the spinal cord stimulator. Additionally, external electrical stimulation has a long history of applications to the muscles. For spinal cord injury (and other forms of paralysis such as stroke or cerebral palsy) FES cycling uses electrodes placed on the surface of the skin activating muscles in a cycling motion. The Stand and Transfer system that I have has electrodes and a receiver that are surgically implanted and an external control unit and transmitting coil.

Read more: The Current Standing System

 

Why the Upgrade

August 2, 2010

A member of the research team asked me, "Why do you want to go through with this?" The answer is not as easy as "because I want to." There are several reasons to go through with the upgrade, some more practical than others.

The current system has eight channels. Currently, one electrode is turned off, the right hamstring. There is another electrode functioning at an extremely low level, the right glut. In essence, I am currently standing on six electrodes rather than eight. It has impacted my standing endurance; reducing the maximum stand time from 45 minutes to just 20 minutes. An average transfer takes less than 30 seconds, so it is still 'functional' but I have become accustom to using it for longer periods of time. Since I am lopsided on electrodes, standing puts strain on my right quadricep and my right knee tends to bend unexpectedly while standing. This requires me to keep both hands on the walker at all times and I no longer feel safe using single handed standing, to get objects out of reach for instance. For this reason, the system is not completely functioning to its original potential.

Read more: Why the Upgrade

   

Expanding from 8 to 24: The New System

August 10, 2010

Let's go over the plans for the new system and account for the 24 channels.

First, we are keeping the old 8 channel system. It consists of 8 intramuscular and epimysial electrodes along with a receiver called an IRS-8. The previous posting listed the location of the electrodes which includes the quadriceps, hamstrings, gluteus maximus and erector spinae. The IRS-8 receiver is implanted in the front left hip lower abdominal area. We are keeping the old system for several reasons:

  • It still works, so why toss out something that technically still works
  • If we go in to change it, then we run the risk of damaging one or more components and
  • My peace of mind. If all else fails, we can go back to the old system. This accounts for 8 of the 24 channels.

For the next 16 channels, we will be implanting an additional receiver, the IST-16, in the right front lower abdominal area. Yes, the name says it all; the device receives power and control information from outside the body and generates 16 channels of stimulation.. The newly implanted electrodes will connect to the IST-16 (I can hear the marketers out there cringing).

Read more: Expanding from 8 to 24: The New System

 

Getting a Baseline

August 16, 2010

It is research and that means testing is a big part of this entire project. A significant factor to move forward was the baseline testing during a visit to Cleveland in March 2010. The results from this testing was pivotal because it determined if I would be a candidate for the new system. Being 12 years post injury, anything could happen.

During this session, members of the research team and I tested several factors, including:

  1. The current system,
  2. The potential areas of implantation using surface stimulation, and
  3. Factors relating to trunk control.

The testing of the current system was performed to understand the thresholds of each muscle currently implanted with an electrode. We tested the strength of the muscles using manual muscle testing; commonly used by physical therapists to grade muscles on a scale of 0-5. The grade is done when the electrode is turned on and the therapist then tests the muscle. The thresholds are determined by testing the lowest setting when a muscle contraction begins and the maximum is the highest setting that is tolerated by the user; that would be me. All of this data is recorded to use as a baseline, a key point to statistically determine if there is improvement or not with the new system. For instance, the current system has two intramuscular electrodes implanted in the lower back area whereas the new system will add intramuscular electrodes near the same area. Here we can compare if there is improved trunk control with the additional electrodes.

Read more: Getting a Baseline

   

Preparation for August 30th

August 20, 2010

They say good preparation leads to successful outcomes and quicker recovery. Some times we have the preconceived idea that just having a surgical procedure will fix a health issue. That knee replacement will help a person walk again or stomach bypass surgery will fix weight problems. In reality, it is not the surgical procedure alone. A component of a successful outcome is truly dictated by the attitude, behavior and participation for the recipient. Surgery is a component to help improve health, not the messiah. Weight management includes exercise, food intake and life style changes. The surgery to upgrade the implanted neuroprosthesis is no different. It will not be the answer to all issues related to spinal cord injury, but the expected outcome will help daily function and long term health.

Since mid July, I have been 'laying low". I’ve reduced activities to create time to prepare for the surgery on August 30. Preparation not only includes mental capacity, arranging to be on 'limited activity’ post surgery but also exercise. The research protocol calls for exercise of the paralyzed muscles targeted to be implanted at least 30 days prior to surgery. Officially, on July 29, I began to comply with a 4 3/4 hour daily exercise protocol. I actually started exercising in mid-July. Starting early helped with the daily adjustment, especially since the first few weeks, I cheated and skipped several exercises. The extra few weeks of exercise helped me to adjust daily living activities to make sure I did not miss any of the exercises for the day.

Read more: Preparation for August 30th

 

Being a Conversant Participant

August 25, 2010

First, I would like to express my sincere gratitude to so many friends and family for your well wishes. I appreciate the cheering 'rah rah' gallery out there. Some of the responses have expressed that this must be 'scary'.

Recently, I heard an interview with Dave Matthews, a musician I admire. He made this statement in a different context but it seems appropriate: "It is easy to fear what we don't understand." Over the past eleven years, I have been able to experience the implanted FES system first hand, follow and be educated on the technological developments over time. I will not pretend to understand all of the engineering and physiology behind the systems, but I understand enough to comprehend the impact. To that end, I am not fearful but excited for the upgrade; much like all those people who waited in line for the first iPad.

Being part of a clinical trial requires responsibilities on the part of the participant but also acceptance of risks. The 'Informed Consent' document sets the stage and clearly communicates the risks and responsibilities for taking part in a clinical trial.

Read more: Being a Conversant Participant

   

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