Welcome

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...

 

A Special Visitor

W. Scott Gould, Deputy Secretary of Veterans Affairs Visits Cleveland FES Center, VA Center of Excellence

Thursday, August 5, 2010 — The Cleveland FES Center, VA Center of Excellence was honored to host W. Scott Gould, Deputy Secretary of Veterans Affairs.

Read more: A Special Visitor

 


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 will receive an upgraded FES system for trunk control and stand/transfer.

This site will contain 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.

Jen's journey begins...

   

Being Green

September 2, 2010

"It's not easy being green."

Kermit the frog was top of our minds as I was released from the surgical recovery room and moved to the clinical research unit of the hospital. Looking down on my legs, they were green. The antiseptic wash used for surgery prep turns the skin this green color, it can also protect from infection. With a little anesthesia still in my system, singing Kermit the frog songs seemed appropriate.

The surgical team exited the long day happy with the outcomes. Maybe the word is 'excited'. There seems to be a buzz around here; knowing you are on the verge of something good.

We had to set the team off to a positive start on surgery day. As the person on the table, I took responsibility for setting the tone (with some help from my sister). On the Friday prior to surgery, they marked on my skin the areas for implant using a skin marker. Then, they sent me home (to my sister's house) for the weekend with a skin marker. 'Just in case any of the marker started to wash off.' I smell an opportunity, plus they should know better. Starting off the day on the surgical table, we had a message on my bottom to the research team and smiley face on my belly button. Providing some comic relief for a long day of surgery.

Apparently the cocktail used to knock me out, aka margarita on the rocks with salt, was not so bad. The transition from knockout to wakeup was smooth. Amazing, particularly since we planned to have me out with a hangover for at least 24 hours. Post surgery, I was awake pretty quickly and yappy as ever on the move from the recovery room to the clinical research unit (CRU). This is the nursing unit where I spent the next five days getting back to 'normal.'

If there is any place to be after a long surgery, it is the CRU. My favorite nurses are here. Most were here when I had my first implant in 1999; some retired and came back. Coming here was a bit of a reunion. This nursing unit focuses on research. The team is extremely skilled, they deliver comfort when you need it, and make you laugh when you are in pain. Of course, homemade cookies from mom doesn't hurt either. (Although the residents ate most of those.)

Otherwise, recovery is very similar to that from any big surgical procedure.

  • Progress from Jell-O and soup to solid foods (well hospital food)
  • Vitals (blood pressure, temp, pulse) and rolling every two hours
  • Breathing exercises to restore lung capacity
  • Visits from residents at 3am
  • Shedding of needles and IV tubes
  • Then there is the glue man.

They used sutures and skin glue to close all the incisions from surgery. The glue, much like super glue (but don't try this at home) seals the wound to help protect from infections. A resident came in afterwards with glue stick in hand to re-seal all the incisions. Just like super glue, it can't touch anything until it dries otherwise, I may be glued to the bed!

Days are moving fast. Day 3 was the first time back in my chair. Within about 10 minutes I said, "Let's go for a walk". The hospital room gets small after a few days. Now is the time to transition home and understand the restrictions for activity. We will take x-rays of the system within the body. Testing will be done with a scope to make sure the system is intact.

The cheering sections on Facebook, Plaxo, Linkedin and just plain email have been so comforting. They have made this process much easier. I am very gracious to have you all out there. Now, I'm back to my green body and transitioning home.

"Some day you'll find it, the rainbow connection. The lovers, the dreamers and me."

 

Jen 2.0

August 30, 2010

Therapist Perspective

Jen is in surgical recovery, this posting is provided by the research therapist...After eight hours, countless pacing time and lots of concentration, Jen 2.0 has emerged from the operating room at MetroHealth Medical Center. Starting at 0630, Jen was wheeled out of the research unit of the medical center and down into the surgical area for final preparations.  There was a bit of chatter while members of the research team poked in to check on their soon-to-be latest technological creation. Then the anesthesiologist goes to work.

After the knockout, the surgical team consisting of three surgeons, two anesthesiologists, six engineers, a very nervous principal investigator (el captain) and me, the therapist, who all go to work like an eloquent ballet.  We have been over the routines, plans and procedures many times before this point.  This is the début performance.

Read more: Jen 2.0

   

Final Testing

August 27, 2010

Pre-op, in other words, more preparation for surgery. In previous postings, the baseline testing and exercise regimen were outlined to gather data and prepare the muscles to be implanted with electrodes. As we draw closer to the surgery date of August 30th, more traditional pre-op testing begins to surface.

Like so many things as a participant in a clinical trial, nothing is ordinary. This week I went for pre-op testing at a local hospital where I live in Florida. Since I'm a distant participant, my local doctor follows the progress and I use local medical facilities for some of the preparation. The research team sent me a letter listing the tests needed. It included some typical stuff like blood

Read more: Final Testing

 

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

   

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

 

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

   

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In the News

August 19, 2010

The Miracle of Science: Helping People with Spinal Cord Injuries Walk

The Miracle of Science: Helping People with Spinal Cord Injuries Walk

You have a spinal cord injury (SCI). Frequently you hear about treatments that may restore mobility, even to the extent of standing and walking. Many of these treatments are offered outside of the United States, and are not regulated by the FDA. The reactions of your support people, including your physicians and therapists, are skeptical and it can be difficult to find reliable data on these options.

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July 6, 2010

Neuros Medical Awarded $1.5 million from U.S. Department of Defense

Neuros Medical Awarded $1.5 million from U.S. Department of Defense

CLEVELAND — Neuros Medical, Inc., a medical device company announced today they have received notification of award for $1.5 million from the U.S. Department of Defense. The Applied Research and Technology Development Award was provided by the Defense Medical Research and Development Program (DMRDP).

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June 10, 2010

Building Function, Building Hope: Orthotic Management of Pediatric Spinal Cord Injury

Building Function, Building Hope: Orthotic Management of Pediatric Spinal Cord Injury

Life, as they say, can turn on a dime. One of the everyday pleasures in a child's life—a car trip, school football game, or bounce on a trampoline—can end with a disastrous snap. Partial or complete spinal cord injury (SCI) currently affects as many as 63,000 American children, according to the Christopher & Dana Reeve Foundation, with consequences that can begin with neural deficit or paralysis and extend to a lifetime of secondary medical problems.

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