People Magazine

People Magazine

July 31st, 2009 by Debbie Fisher

I found this on RSDlifesavers Cheryl posted it there so thank her after you read this.

August 10, 2009

By Alicia Dennis
PEOPLE Magazine
RSDSA: Information on Ketamine Treatment

John
Roach looks up at wife Rosemary from his bed in room 133 at the
Hospital San Jose in Monterrey, Mexico. "Don't say goodbye," he pleads
as doctors prepare to send the burly grandfather form Allentown, Pa.,
into unconsciousness. "It's okay," Rosemary says. "Pleasant dreams."

Soon,
deep in a coma, John descends into a frightening, topsy-turvy world.
Scene: He's in a strange house with paintings on the ceiling. Scene:
He's watching as his cat rushes into the path of an oncoming car.
Scene: He's a World War II soldier fighting on a blood-soaked
battlefield. "It was weird and frightening," John recalls of his
voluntary, five-day ordeal in late May. "But I needed to do something."

Suffering
from a debilitating neuromuscular disorder called reflex sympathetic
dystrophy (RSD) , John, 50, is one of about 100 chronic-pain patients
resorting to a radical new treatment in search of relief-medically
induced coma using ketamine, a surgical anesthetic and hallucinogen
sold illegally as "Special K." advocates say ketamine comas can be a
godsend for some. "We're giving people in excruciating pain a normal
life," says Dr. Robert J. Schwartzman, neurology chairman at
Philadelphia's Drexel University College of Medicine; since coma
therapy isn't FDA approved, he's sent more than 60 patients to Germany
and Mexico. But other experts say the treatment, which costs as much as
$ 50,000 with travel, is too risky. "Vulnerable people are getting
something expensive and potentially dangerous," says Dr. Norman Harden
of the Rehabilitation Institute of Chicago.

Some
200,000 people suffer from RSD, in which ordinary pain escalates to
crippling levels. "Think of holding a blowtorch to your skin," says
John, whose entire left side was affected after he fell down rotted
stairs and tore his rotator cuff in 2002. Because ketamine blocks pain
receptors, Schwartzman says, very high doses can restart the nervous
system, "like rebooting a computer."

Brandy
Sachs, 23, of Christianburg, Va., had spent seven years in a wheelchair
after a finger injury and ankle sprain spiraled into all-over agony. "I
was giving her pain meds in doses that would have killed a horse," says
her family doctor, Jeremy Freeman. Last fall, after undergoing a
five-day coma in Germany, Brandy needed months of therapy to relearn
how to walk, talk and eat. But now, she says, she's pain-free and plans
to start her master's degree: "It's a miracle."

Not
always. In October 2008, RSD patient and mother of three Laura Beckett,
47, of Magnolia, N.J., developed pneumonia while in a coma in Germany
and was kept under for three weeks as doctors fought to save her. She
woke up paralyzed from the neck down and now lives at a rehabilitation
center. "It's an understatement to say things went wrong," says husband
Karl, though he adds his wife's pain was so unbearable they would
likely choose the coma again. Says Schwartzman: 'We've had tragic
outcomes. But this is only attempted after every other treatment has
been tried."

John,
a jovial retired phone-company worker, had tried surgery, physical
therapy and heavy doses of pain medication, including OxyContin,
codeine and fentanyl. When nothing worked, he thought of ending it all.
"I couldn't be touched," he says. "I couldn't hold my wife's hand or
sleep next to her. It wasn't the life I wanted."

Back
home now, John is amazed that he's been virtually pain-free. Getting
regular ketamine booster injections (at non-coma levels) from his
physicians, Schwartzman and Dr. Anthony Kirkpatrick, he has removed a
protective compression sleeve he wore for years and can once again wear
his watch and wedding ring. Best of all, he can walk hand in hand with
Rosemary and scoop up his granddaughters for hugs. "I have been missing
all the little joys in life," he says. "Now I want to live every one of
them."

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  • Rebecca

    I saw this edition of People on the stands today... they show pictures of him in the coma... it's a very interesting article. I hope that it will get people thinking about RSD/CRPS and learning more!

    13 months ago

  • NATHAN

    its like    every other treatment it does one of three things nothing , better, or way worse we are all so lucky to have won the CRPS lotto!

    13 months ago

  • Debbie

    Sonoma well put! Rebecca I am going to get the mag as well.

    13 months ago

  • Carolyn

    My oral surgeon had this in his office saving it for me when I sent back for followup.  They are super with me.  I'm very thankful he put ketamine in my anesthesia mix.  The result has given me great relief.

    13 months ago

  • Debbie

    Awesome CAROLYN  I am thankful this has had an impact on your care : )

    13 months ago

  • Connie Marie

    I received an email from the awesome site www.rsdsa.org with the PEOPLE article and I am THRILLED to see CRPS being spoken of nationally in a very popular magazine.  It's just the beginning, I really believe that........please write your CRPS story in "COMMUNITIES" under "MEDIA LETTERS", as the cruz is to have ONE place for all of us to write our own CRPS story and then to sent out in bulk to all the major networks, news sources, etc.  It is us patients that really need to join together to make some real noise through our MEDIA LETTERS.......enough of living in the dark ages, with most medical people knowing NOTHING about CRPS!  Thank you to all who have written their MEDIA LETTER and to those who will.  And YIPPEE to PEOPLE magazine to bring some light to our disease!  Peace, Connie Marie

    12 months ago

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