Woman's condition upgraded from persistent vegitative state

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From http://www.lancasteronline.com/pages/news/local/4/13441

'She was aware from the beginning'

Local woman's condition upgraded from persistent vegitative state

By Lori Van Ingen

Intelligencer Journal

Published: Apr 11, 2005 9:25 AM EST

Amy Boyer had just finished telling her 6-year-old son, Chance

Mihalik, to put on his shoes so they could go to an appointment.

She went downstairs to pick up some papers.

That's when she collapsed.

Amy's father, Jim Boyer, with whom she and her son lived in

burg, heard Chance calling her, wondering where she was.

Jim and Chance found Amy unresponsive but with good color. The

doctors don't really know what happened that day - July 23, 2003 -

other than her heart stopped and she probably went without oxygen for

two to six minutes. Amy survived the anoxic episode, though she was

not expected to live.

But she did.

After pulling through the earliest stages, doctors diagnosed her as

being in a persistent vegetative state, believing all movements she

made were likely reflexive.

Her family didn't give up on her, however. They discovered a

nontraditional therapy that has upgraded her diagnosis.

She now can eat, speak a few words and has some muscle movement.

" We feel very lucky, " Jim said last week. " (T)he Schindlers ... were

not even allowed to see (their daughter, Terri Schiavo) for one year. "

Schiavo also was diagnosed as being in a persistent vegetative state

and her fate became the subject of a long and very public legal

debate.

Jim said he felt Schiavo should have been allowed to " live and

thrive. It was cruel and inhumane (to take away her feeding tube and

let her die). "

Schiavo's blood relatives were blocked from seeing her, Jim said, and

she was kept in a darkened room with no radio or television. " With

treatment and therapy, " he said, " she would have been further along

than she was. "

Amy's brother, , said what his family has learned from this

experience is that doctors aren't always right.

" Early on, in the first couple of days, we were told she was not

going to survive, " Jim said. Amy had contracted pneumonia and a

serious blood infection at the hospital. " But she beat it, " he said.

" Day 1, they were already starting to write her off, " he said.

Doctors used a CT scan showing little brain activity as the basis for

their PVS diagnosis.

" We knew she was not in that state, " Jim said. " She was aware from

the beginning, but nobody believed us. They gave up was our feeling. "

" Had we listened to them, Amy would be lying in a bed for the next 40

years, " said. " We fought for everything with Amy because we

knew Amy would have done the same for us. Amy was a fighter. If there

is anybody who could come back from her injury, it would be her. "

Amy spent a month at a burg osteopathic hospital and another at

the former IHS nursing home in Dauphin County before she was admitted

to the health care unit at Masonic Village in town in

September 2003.

" If you have to be somewhere, this is the place to be, " Jim said. The

staff and patients at Masonic Village have been wonderful to Amy, he

said.

Now 35, Amy is one of the lucky ones. She has had a lot of family support.

" For six to eight months, there was someone always with her, " Jim

said. They worked on the range of motion in her extremities because

the insurance company stopped paying for therapy after her diagnosis.

When the family could find little information about anoxic brain

injuries, decided to start his own Web site,

www.anoxicinjury.com, to " find out more (information) and hook up

with others in similar situations, " said. Today, the site has

more than 200 members.

" We all talk and help each other, " he said. " It's good therapy for

everybody. It's a terrible thing to go through, but people bend over

backwards to help someone else out in the same position. "

The Web site has been very beneficial for Amy since the Boyers were

put in touch with Dr. Hana F. Al-Ahmar, an Iraqi doctor living in

England who is a consultant clinical neuropsychologist.

Al-Ahmar recommended Amy be given hyperbaric oxygen therapy, which is

usually given to deep-sea divers for the bends.

HBOT recently has been used as a treatment for neurological

conditions arising from stroke, cerebral palsy, coma and anoxic brain

injury.

Other doctors " pooh-poohed " the therapy for Amy, Jim said, and

insurance would not pay for the treatments or even transportation

because it was considered experimental for a person diagnosed with

PVS.

But the more the Boyers heard about HBOT, the more they became

convinced Amy would benefit from it. So Amy was given a series of 40

treatments at Hyperbaric Oxygen Medical Center in Columbia, beginning

right before Christmas 2004 and ending in February.

Because Al-Ahmar had taken a keen interest in Amy's case, she flew to

town - " out of the goodness of her heart, " Jim said - to do

her own assessment of Amy.

After Al-Ahmar examined her, she was convinced Amy could communicate.

Her goal in the three weeks she spent with Amy was to get her to

learn how to use a switch to answer yes-or-no questions. The switch

would give her some control in making her own decisions.

" (Amy) learned it the first day she worked with her, " Jim said. " The

second day she was answering yes-and-no questions. "

After working with Amy, Al-Ahmar determined she has some sight,

although not good vision, and her immediate, delayed and

autobiographical memory all were intact. She also could read and tell

time.

" The whole time Hana was here, (Amy) reached no ceiling, " Jim said.

" Amy would do whatever she was asked. "

Al-Ahmar concluded Amy was not in PVS and requested the diagnosis be

changed to " incomplete locked-in state. "

" (Amy) has been aware of everything that happened to her but has not

been able to communicate this because the connections between her

brain and her muscles have been damaged, " Al-Ahmar said via e-mail

last week.

Three weeks ago, local doctors upgraded Amy's condition from PVS to

conform with Al-Ahmar's diagnosis.

Two weeks ago, she passed a swallowing test at Hershey Medical Center

with flying colors. So instead of relying solely on a feeding tube,

Amy now can eat thickened liquids like gelatine and applesauce.

" The more food she gets, the less time she will be on a feeding

tube, " Jim said, " and hopefully it will disappear. "

Since the diagnosis upgrade, Amy also has been receiving three hours

of speech, physical and occupational therapy at Masonic Village five

days a week, and the insurance company is once again paying for it.

" They've been very caring here at Masonic Village, " Jim said. " They

help her the best they can, but she needs more aggressive therapy to

be the best she can be. "

Al-Ahmar said Amy has shown " amazing progress " in her recovery, but

now she needs intensive neurological rehabilitation.

" She is a determined young woman who has expressed a wish and a will

to improve and go back to her life and family, " Al-Ahmar said.

Three weeks ago, Amy was able to go home for a visit for the first time.

" She did super, " Jim said.

" Amy is a courageous and a special woman, " Al-Ahmar said. " She has

been 'locked in' by her physical disabilities for nearly two years.

" She now knows that there is a way out. Intensive rehabilitation will

help her out, and she is determined to work hard at it. Amy was

waiting all this time for someone to 'unlock' her! "

Lori's e-mail address is lvaningenlnpnews.com

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