Elisha Doesn’t Regret Decision to Amputate for Ehlers Danlos Pain Relief: Watch VIDEO STORY
Watch this video story! Elisha Morgan is recovering from a controversial foot amputation — with no regrets. Like most EDSers, her optimism is sprinkled with caution – since outcomes are so uncertain… Whether you agree with her decision or not, there is no doubt of the bravery she’s displayed in this situation — we salute her strong spirit!
(Part 3 of 3 is presented below.)
BY LESLIE BRIDGERS
Elisha Morgan has learned to deal with letdowns.
“There’s been excitement, then disappointment, excitement, then disappointment,” she said about the buildup before trying different treatments for her foot pain, and the devastation that followed when none of them worked.
So when her health care providers at New England Rehabilitation Hospital of Portland told her last summer that her progress looked good, she didn’t have any expectations.
“I’m not getting my hopes up,” she said in June.
Two months earlier, Morgan had her left foot amputated in a drastic attempt to alleviate the foot pain that had plagued her for a decade and had never responded to treatments, including surgeries and shock wave therapy. The amputation was an extreme response to chronic pain, a condition that affects 100 million Americans.
While waiting for her limb to heal so she could start using a prosthetic, Morgan learned to hop around her house, load her wheelchair in her car on one leg and accept that being less mobile for a while was a necessity if she wanted to regain an active life.
Week after week, her rehab staff determined she wasn’t ready to put weight on her residual limb. In the meantime, the house she and her husband had been building in Gorham was ready to move into. With the use of only one leg, she couldn’t do much to help.
They had started looking for a new home the previous fall, hoping to make the move before the surgery, but couldn’t find anything they liked, so they decided to build.
The open floor plan in the new home made it easier for her to maneuver her wheelchair than it had been in their Westbrook townhouse. But she still had to scoot up the stairs to brush 3-year-old Ashley’s teeth in the bathroom, and had to hop around the kitchen, searching through unfamiliar drawers, to make cereal for 6-year-old Eleanor.
“Everything is probably four times harder,” she said of life without half of her lower leg.
At an appointment in July at Atlantic ProCare, where her prosthetic was developed, she walked for the first time on an artificial limb – a plastic socket with a short metal pole and an artificial foot stuffed into a sneaker.
It was awkward, she said, like walking on stilts, but it allowed her to take pressure off her right foot.
“It felt nice to have something solid to stand on,” she said.
She did it again three days later in the hallway of the rehab hospital and got the go-ahead to take the prosthetic home, along with instructions to wear it only a couple of hours a day at first, slowly building up her tolerance.
But Morgan got ahead of schedule. Putting on and removing the prosthetic in her car in the parking lot at Idexx Laboratories, where she works, was difficult and time-consuming – especially as the muscles in the stump shrunk and she needed to wear sock upon sock for it to fit.
She started keeping it on throughout her work day and taking it off when she was home.
Within a month, she was wearing it while shopping at Target for back-to-school clothes, going to the post office and picking up groceries. Sometimes her leg would get sore or go numb, but there was a major difference from before.
“I know as soon as I’m off of it, it’s not going to hurt,” she said.
Morgan had planned to also have her right foot amputated after she recovered from the first procedure, but is now reconsidering. Though she never lets more than a few tears fall, the thought of going through the rehab process again gets her choked up.
“As much as I put on a really happy face and act like it’s no big deal, it’s a challenge,” she said. “It’s a long, challenging process.”
By favoring her prosthetic, her right foot hasn’t hurt as much, and the thought of losing both feet is unsettling.
“I’m happy with the decision to do it, but I’m not really looking forward to cutting my other foot off either,” she said.
Then there’s the issue of her hands, which started hurting around the same time as her feet.
“We don’t know if we can go to the hook,” her husband said – keeping it light.
Morgan’s not too worried about that. They only hurt when she uses them a lot and the pain hasn’t worsened over time. More concerning is how the genetic condition that’s caused her pain could affect her daughters.
Morgan doesn’t know anyone in her family who’s had Ehlers-Danlos Syndrome, a rare collagen disorder that results in hyper-flexible joints. But there’s a 50-50 chance she’ll pass it on.
“Fortunately, Eleanor is as stiff as I am,” her husband said.
Ashley, however, is more flexible, like her mother. She was born with a dislocated hip and dislocated her elbow when she was 2.
Doctors won’t be able to tell for sure if the girls have it until they’re teenagers. For now, they’re holding off on signing Ashley up for gymnastics, for fear of wearing out her joints.
After all, the main motivation for Morgan’s surgery was so she could do more with her children.
“They’re going to do so many things in life, and I want to be there for them,” she said.
The pain has already taken away opportunities for Morgan, from moving out of Maine to going into the Peace Corps. She doesn’t want to give up any more.
“If this had never happened, I would probably be a completely different person,” she said.
But that also might mean not having the family she does now.
“In a way,” she said, “everything happens for a reason.”
A few months ago, Morgan started canceling rehab appointments when she had conflicts. Eventually, the doctors agreed she could stop going altogether.
She used a cane the first time she took a walk with her family along their new street, stopping to introduce themselves to neighbors.
The cane quickly turned into a toy for the girls – held over their shoulder like a shotgun or twirled like a baton – and the walks became evening rituals, when they weren’t all riding their bikes.
Morgan started venturing beyond their street for longer bike rides by herself, and joined spinning classes in the gym at her work. She hasn’t told the instructor she has a prosthetic and no one seems to notice, she said.
Four days before a wedding on Columbus Day weekend, Morgan got fitted for a foot that she could screw into her prosthetic and wear with the strappy 2-inch heels she bought to go with her bridesmaid’s dress.
She walked down the aisle in them and kept them on for most of the reception afterward, before going to her car, screwing her regular foot back on and switching to sneakers.
But for at least an hour, still in her heels, as pop songs played from a computer, she danced.
Elisha is managing well after her amputation ordeal. No regrets! However, she is reconsidering whether to amputate her other foot. For now, this brave lady is enjoying her pain relief and improved mobility.
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