- Associated Press - Friday, February 20, 2015

KANSAS CITY, Kan. (AP) - Sometimes it feels like a knife is slicing through Pamela Jenkins’ right foot.

But, she doesn’t have a right foot.

Her leg was amputated more than a year ago below the knee because of a circulation problem gone really bad.

“I notice it’s worse when I take my prosthetic leg off and go to bed,” Jenkins said.

Phantom pain is very real to the group of amputees who were attending the regular meeting of the Kansas Amputee Support System. Heads nodded in unison as they listened to the February guest speaker, Dr. John Fan, speak of the itching, tingling and the sometimes seething pain experienced where a limb no longer exists. Even though a leg is cut off, there is still memory in the brain, a connection to the amputated part.

Fan explained that everyone has different reasons for the pain. Methods used to treat the phantom pain include pain medications and antidepressants. He also mentioned such methods as light massage, electrical stimulation and hot-and-cold therapy. For some mental imagery works, where the person attempts to program the brain into thinking that the missing limb is still there.

“Massage is very important,” Fan said, recommending people massage the residual limb for 10 to 15 minutes every day. Phyllis Swank does this every night to what remains of her leg which she calls “Stumpy.”

“I call mine Rosie,” said Jenkins. Since she has experienced her amputation she has learned the hard way how important it is for the doctor to make the remaining bone round to fit the prosthesis.

It’s also important to meet with a prosthetist even before the amputation, The Hutchinson News (https://bit.ly/1E2oGwp ) reports.

“Don’t go into it blindly,” Jenkins said.

Jenkins, who is scheduled for another surgery March 4 to remove even more of the residual limb, was explaining how the amputee support group helps its members adjust to life without a part of their body.

When she goes through this next surgery, things will be better. She won’t feel so alone, because the members of this group will be there for her.

“I can turn to any of them for support,” she said. “Last time I was totally by myself. Doctors don’t know, not if they haven’t had an amputation.”

It was back in May that Jenkins and Phyllis Swank, who also has an amputation below the knee, got the group going. They wanted to reach out to others who had experienced amputation.

“There are people who tell me they don’t need help,” Jenkins said. “And I say to them, what about the people who need you?”

As Don Hough, Salina, came through the door, he was greeted by applause because he was no longer in a wheelchair. He was walking on his new prosthesis, albeit with a walker. The group was rooting for him and happy to learn he was trying out a new design of prosthesis.

Getting the word out to those who might be dealing with a recent amputation isn’t easy, according to Jenkins. Because of HIPPA laws doctors have to maintain patient confidentiality. However, Hutchinson physicians Dr. Michael Hagley and Dr. John Fan are supporters of the group, and have volunteered to speak at monthly meetings.

“We are a peer network group with the Amputee Coalition of America and currently the only group listed in the state of Kansas,” Jenkins said.

According to Steve Peeples, owner of Peeples Orthotics and Prosthetics of Wichita, there may be other amputee groups. However the Hutchinson group is the only one he knows of that is organized entirely by amputees. The others have an agenda, he said, they are organized by physical therapists or groups who just want the amputees business.

This group is all about supporting each other through the highs and lows of adjusting to life without a part of their body they once had been there.

Matt Amos, Mount Hope, bounded through the door on two high-tech prosthesis, bringing with him a positive energy that filled the room. A double amputee, he was wounded in Afghanistan after stepping on an I.E.D. As Fan told the group that 90 percent of amputees have phantom pain, Amos said it hasn’t been a problem.

“I’m an anomaly,” Amos said, admitting he was part of that 10 percent. “I put the legs on in the morning and go about my day. I am a complete person and I don’t think about it. Amputation isn’t the single part of my life.”

That kind of positive attitude spreads around the room. Jenkins appreciates the positive attitude Amos brings to the group, and his reminder that she and everyone can “push through this.”

“He’s just one of those kind of guys,” Jenkins said.

However, not everyone can afford the excellent care Amos has received through the Veteran’s Administration. Along with the emotional challenges of an amputation, the group discussed how expensive a prosthesis can be. Health insurance companies have strict requirements and criteria that have to be met before a leg can be replaced.

“This foot is shot,” said Peeples, as he sat working on Tony Gossman’s prosthetic after Fan’s program was completed.

Gossman’s leg is wearing out and he doesn’t have the insurance to replace it. But, this is where the power of the group becomes most apparent. Swank ran home and got a socket liner she wasn’t using. And Peeples fiddled with it until he could get it to work.

Meanwhile, Amos asked Gossman what size his foot was, then discovered the two wear the same size. Amos offered an extra foot to Gossman. An amputee’s leg is made up of a socket, which the stump slips into, then there is the pylon, the metal part of the leg which is attached to the foot. Just like people there are many kinds of feet, and they come in different shapes and sizes.

“Everyone wants to help,” Jenkins said of the group.

Kansas Amputee Support Systems has a Facebook page. They want to get the word out that there is a place amputees can go with their family, friends and caregivers and be with people who understand.

“Between all of us we can help each other,” Jenkins said. “We may have been through what they are going through, or we may have had the same leg issue. We can point them in the right direction.”


Information from: The Hutchinson (Kan.) News, https://www.hutchnews.com

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