In the four years since Reggie Edgerton, renowned SCI researcher from UCLA and chief research scientist of NeuroRecovery Technologies, announced the groundbreaking results of the epidural stimulator implant trial he designed, the media’s primary focus has been on the return of voluntary leg function and the ability to stand that the four initial subjects enjoyed. The fact that they also had improvements in sexual function has generally been mentioned as an afterthought, an unexpected and welcome surprise to the participants and researchers alike.

Indeed, improvement in sexual function may be, arguably, the most important functional gain for the four subjects in the trial. And it turns out another type of electrical stimulation can enable a similar result in some people with SCI. But the most dramatic return of sexual function following epidural stimulator implant has occurred with the first subject, Rob Summers, 29.

Injured in 2006, Summers was a C6-7 quad with no movement or sensation below his injury — except for some feeling in the anal region — at the time of his implant in December 2009. He had an active sex life prior to the stimulator, but intercourse was predicated on pharmaceuticals, with no genital sensation. “Before the stimulator I could only get a sustainable, functional erection with 100mg of Viagra, and even then it was a reflex erection.

[due to physical rather than mental stimulation], and I had zero sensation and wasn’t able to ejaculate, except for a few reflex retrograde [when semen mixes with urine in the bladder] ejaculations,” he says.

After the epi-stim implant, Summers’ sexual functions started slowly returning, much to his surprise. “My focus was on standing and walking,” he says. But his erections became stronger and were lasting too long, so he started scaling back on Viagra. “Within a few months I started noticing sensation. At first it was like. ‘Wow! When did this start?’ I had my first orgasm around the same time.”

Summers told his girlfriend that sexual muscles are like any other muscle, and to improve he had to train often. “The more sex I have, the more things have improved,” he says. “Within a year I was able to ejaculate most of the time, and I no longer needed Viagra for a functional erection. Now I get erections constantly, and they aren’t just reflex erections. If my girlfriend walks by in tight leather pants, I will get an erection.”

Epi-stim has also been a huge help with Summers’ autonomic dysreflexia. “Before the stimulator, I used to get dysreflexia so bad I would see stars and feel like I was going to pass out,” he says. “Since the stimulator, it has improved drastically. I rarely get AD, and if I do, it is minor and usually because of a UTI.”

Sexual sensation has continued to return for Summers. “It isn’t ‘normal’ sensation compared to before my injury, and it isn’t as heightened a sensation as before my injury, but it is pleasurable,” he says. “I can feel what feels good and what doesn’t feel good. I can feel when I am close to reaching ejaculation and I can feel ejaculation. If I’m in bed with my eyes closed, I can feel if my girlfriend touches the head of my penis, the shaft, my testicles, everything. We have been having a lot of sex. I can even tell if we need to add lube or if she is very wet.”

In an interesting twist, sex works better with the stimulator turned off. “It is more difficult to get and maintain an erection with the stimulator on because it targets and triggers so many muscles,” he says.

Three More Subjects Replicate Results
In 2007 Drew Meas, 36, sustained a C6-7 SCI. At the time of his epidural stimulator implant in 2011, Meas had no movement below his injury but did have sensation. Meas’ sexual functions started improving within two weeks after the implant was activated. “I still have grip in my right hand, so that makes me the perfect candidate for self-exploration,” he says. “Before the stimulator my erections were hit and miss. It improved the quality of my erections, and although I had some sensation, it improved that as well. Now I can get aroused with the slightest touch.” Unlike Summers, Meas isn’t able to get an erection via sight or from erotic thoughts.

The most important sexual improvement for Meas is that the epi-stim has mellowed out his autonomic dysreflexia. “Before the stimulator, sex would cause dysreflexia so bad that I couldn’t reach ejaculation/orgasm. It felt like my head would explode. Now I can ejaculate without getting dysreflexia.” Meas says that, like Summers, his sexual function works better with the stimulator turned off because too many muscle groups are activated when it is on.

Kent Stephenson, 25, was injured in 2009, a T4 motor-complete para. He got his epi-stim implant in 2012. Before the implant he was not able to maintain an erection for intercourse without large doses of Viagra. In a CNN interview, he stated that a side benefit of epi-stim is the return of functional erections, saying, “I went from zero to hero.” He went on to explain that with today’s high-tech wheelchairs, walking isn’t a big deal to him, but being able to have sex is a big deal.

The fourth subject to get an epidural stimulator is Dustin Shillcox, 31, who became a T5 complete para in 2010 and underwent his stimulator implant in January 2013. Shillcox says prior to the stimulator he would get reflex erections, but they weren’t functional for sex. He says the quality of his erections are better since the stimulator, but haven’t improved as dramatically as the other guys. “I recently connected the dots. Erections are like standing — I need to work on them,” he says. “I just started working on them, and they have definitely gotten better.”

Different Stimulator, Similar Results
Another form of electrical stimulation has improved the sex life of Eric Stampfli, 57, who is in his 40th year as a T11-12 complete para. Three years ago Stampfli’s urologist surgically implanted an InterStim (see resources) — a device designed to reduce bowel and bladder incontinence via an implanted electrode that stimulates the sacral nerve. InterStim is FDA-approved for the general public but is considered “off label” for use in people with SCI.

Following the implant, Stampfli wheeled into his urologist’s office, and she turned on the device’s remote control — about the size of a TV remote. “All of a sudden my penis started tingling, and I said ‘Wow! This is a sensation I haven’t felt in 40 years!’” Stampfli was given a controller to take home.

“Before InterStim I could imagine I’m feeling sex during intercourse, but it was all in my mind,” says Stampfli. “But if my girlfriend was playing with my penis and I didn’t see, I wouldn’t know it. Now, if she touches my penis, I know it instantly. I can feel sex now. The sensation goes from a dull tingly feeling, which still feels really good, and builds to feeling really-really good. The sensation is getting a lot stronger and better as I have more sex.”

Unlike with epi-stim, Stampfli must have the Interstim controller turned on and on the right setting. Turned to low, he doesn’t feel anything, but on high the tingling becomes too much — even painful — to enjoy intercourse. Moderation is the key.

Stampfli still needs to use Papavarine injections to get an erection and hasn’t been able to reach orgasm, yet. “I was 17 when I had my last penile orgasm, so I’m still sorting this out in my brain,” he says. “I’m thinking too much to get past the point where the pleasure gets almost to the point of pain and you let go and over the edge, which is how I remember orgasm. I’m toying with the idea of smoking pot to help me stop thinking so much and reach orgasm. I have a beautiful 30-something girlfriend, and I really enjoy trying to sort this out.”

Stampfli says his urologist, who didn’t want to go on record, told him that some of her other SCI patients have reported similar results in terms of sexual sensation with InterStim. However, Dr. Michael Kennelly, director of urology at Carolinas Rehabilitation in Charlotte, N.C., says he has not heard any reports of return of sensation in his patients with SCI that are using InterStim, and at this point there aren’t any reports of this in medical literature. Kennelly adds that, hopefully, further research will give some insight into results like Stampfli’s.

Recently at an appointment, Stampfli’s urologist asked whether the InterStim had helped with his urinary continence. He said not really. “My urologist said, ‘Then, perhaps we should take it out.’ I replied, ‘And give up sexual sensation? No way!’ To which she nodded her head and gave a wry smile, giving me the impression she suspected the sexual response from the start.”

What Makes E-Stim Work?
Does anyone understand what is enabling the sexual return? Susan J. Harkema, who directs the Reeve Foundation’s Neurorecovery Network and is also rehabilitation research director of the University of Louisville’s Kentucky Spinal Cord Injury Research Center and the director of research at Frazier Rehab Institute, did the research on the subjects. “This is a new frontier, and we didn’t go into the study hypothesizing that sexual function would have been affected at all,” she says. “You have to take a leap of faith that the primary controller of all these systems — bowel, bladder, sexual function — is in the spinal cord. When we stimulated the spinal cord, we got return in a lot of these things. Our goal is to understand the capacity of the spinal cord, and if there is just a tiny bit of nerve coming through from the brain, you can take advantage of that.”

Edgerton explains it in a similar way. “The nervous system adapts to what it does all the time. With SCI it is adapting to a relatively nonfunctional state,” he says. “We are stimulating the entire circuitry, the motor system and the autonomic system as well. We are kind of waking up the networks within the spinal cord in general.”

As to why sexual response works better when the stimulator is off, Harkema says this is the first she has heard of this, but it doesn’t surprise her. “The subjects know their bodies and are trying different things, which results in more experiments and information,” she says.

On Stampfli’s experience with InterStim sacral nerve stimulation, Harkema and Edgerton said it is probably a similar version of what is happening with their subjects, directly stimulating sensory fibers going back to the spinal cord and returning to the sexual organs, which is helping to reawaken that circuitry.

Edgerton and Harkema say they didn’t expect return of sexual function when they started the trial, so they didn’t look at any baselines. However, sexual baselines will be included for the next round of 36 subjects in The Big Idea [See resources].

Edgerton explains that initial observations with the stimulator have opened a whole new arena of possibilities. “We have just scratched the surface. With better technology — the next generation of stimulators we are working on — we can achieve more,” he says. “With all of this new information, there is very good reason for hope of improved function. I think it is going to happen. It is just a matter of how long it is going to take us to get there.

Resources
• Rob Summers, www.newmobility.com/2011/09/rob-summers-from-quad-to-para-and-beyond/
• InterStim by Medtronic, www.medtronic.com/patients/overactive-bladder/about-therapy/
• The Big Idea, www.reevebigidea.org; www.newmobility.com/2014/12/the-big-idea/
• Edgerton’s latest research, www.newmobility.com/2015/04/when-rehab-becomes-recovery/

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What About Women?

Susan Harkema, lead researcher in the Reeve Foundation’s ongoing epidural stimulator trials, explains that the reason the first four epidural stimulator subjects are male comes down to statistics and luck of the draw. Eighty percent of people with SCI in the U.S. are male, and during the first study, researchers went down a list of people that met the parameters for the study, and the first four volunteers that qualified were male.

Going forward, regardless of the study, Harkema says 25 percent of the subjects will be female. For example, if the first three volunteers are women, that will be fine. But if the first three volunteers are male, they will keep going down the list until they find a female for the fourth. A total of 36 subjects are in the process of being chosen for the latest epidural stimulator trial.

More specifically relevant to this story, what about female sexual pleasure? Will women with SCI experience the same improvements as men? Harkema says that although there are obvious differences between men and women, there will also be similarities; for instance, increased blood flow to the genital area. However, she says, pending trial results, “We have no idea what the response will be in women.” Hopefully, the results will turn out to be as positive and exciting as the results with men.

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About Our Cover Models

Steve Dalton and his wife, Sydney Sauber, posed for this month’s cover because they wanted to illustrate that intimacy is possible — and essential — after acquiring a disability. Steve, a systems analyst at UC Berkeley who became a T4 para from a motorcycle accident in 2002, says Sydney, an independent brain researcher, is his “dream partner.”

“I wanted someone in my life who would be an equal partner in our relationship,” he says. “Sydney is exactly that; she is open and compassionate in her communication, she works as hard as I do for our success, and I never tire of being with her.” The couple enjoys talking about ideas, making and listening to music, exploring the outdoors, spending time with family and watching documentary films. “And,” Steve says, “we’re constantly seeking ways to use our life experiences to help others move ahead in their own lives.” The photo shoot was a way to do that — and more. “I’m honored to have the relationship I do with Sydney — one in which just being around one another encourages us to be our best selves. She is an incredible person in her own right, and somehow this photo shoot seemed to me to be an opportunity to capture how much I love her.”

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