WINDSOR LOCKS - The many bottles of prescription and over-the-counter medicines on Mary Remotti's nightstand do little to ease her pain.
On her best days she feels like her skin is frozen while simultaneously burning. On her worst, she suffers violent spasms that endanger her life. Paralysis has overtaken her, leaving her able only to speak, move her head, and wiggle one of her thumbs.
"You don't know how badly I want to throw my arms around my mom and dad and brother and uncle," Mary says of the family members dedicating themselves to her recovery.
Despite her reality, Mary, 18, is cautiously optimistic that a controversial treatment will relieve her pain and allow her to resume the promising life she wishes to fulfill.
Mary was diagnosed with reflex sympathetic dystrophy in 2005. The disease caused debilitating pain throughout her body, often sending her into severe spasms and systematically paralyzing her limbs.
According to the Web site of the Reflex Sympathetic Dystrophy Syndrome, RSD is a malfunction of part of the nervous system that develops after an injury, such as a sprain or fall. Nerves misfire, sending constant pain signals to the brain.
Despite the pain, she managed to graduate from Windsor Locks High School in June.
Since then, RSD has grabbed hold of Mary. The symptoms are so extensive and the disease so complicated that she has trouble explaining her condition even to doctors.
Mary has been prescribed over 100 different medications and seen countless specialists. Any contact with her skin can be excruciating; her sheets must be smooth and her blankets hover over her suspended from pipes to keep her warm without touching her body.
"The smallest wrinkle in my sheets will send me through the roof," Mary says.
She frequently suffers seizure-like spasms, and as of Friday she was pleased to have gone more than a week without an episode. She says those are the scariest times of all because whenever she starts to spasm, she usually wakes up disoriented in a hospital bed surrounded by strangers.
Even a drop of water is "excessively painful," says her brother, James Remotti, and bathing is traumatic for Mary and the rest of her family.
"I don't want to be like this," Mary says. "I don't want to let it win. There are too many things I want to accomplish."
Mary says she remains inspired by the love of her family and friends. Her hope is to regain her strength and ability to walk, join the local Fire Department, and get on track for a career in environmental science and wildlife management.
However, James and Mary know the prognosis is not good. If she goes much longer at the current rate, she faces complete paralysis and internal and external body failure.
Mary has traveled back to Tampa, Fla., to consult with Dr. Anthony Kirkpatrick, a leading RSD expert. Out of the 2,000 people nationally suffering from the disease, Mary's case has been deemed the second-worst and all options for treatment have been eliminated except one.
The Remottis are raising money to send Mary to Monterrey, Mexico, for ketamine coma therapy. Fitzpatrick will induce a coma in Mary, and she will remain in that state for up to one week while the doctor administers the ketamine.
The hope is that the ketamine will essentially "reboot" Mary's brain to send appropriate signals through her
nervous system, thus reducing the effects of RSD.
The treatment, however, is controversial and cannot be done in the U.S.
"The compassionate use of ketamine does not have U.S approval," James says.
Ketamine is an anesthetic used in animals and humans. Its psychedelic side effects make it a popular recreational drug, often called "Special K."
James said the method has worked for virtually all of the patients who have undergone it. Mary knows it won't eliminate all her pain, but it will give her a chance to walk again, feel touch without agony, and give her back her life.
"I'm pretty scared, but it's a risk I have to take," Mary says.
James says dealing with the family's insurance provider has been a nightmare, since it is unwilling to pay for most treatment methods. The Remottis must pay for the ketamine coma treatment out of their own pocket and have been advised they need approximately $200,000. Ideally, the treatment needs to happen between now and the middle of November.
Asking for help has never been one of Mary's strengths.
Always self-motivated and headstrong, she hates feeling like she has to reach out, but she knows she must if she wants the treatment.
"It's tough having to ask for help, especially when you are a do-it-yourself person," Mary says.
James is on staff at the Windsor Locks Fire Department and said firefighters have been fantastic in raising money and awareness. The Colchester Fire Department this weekend visited Mary at her home to present a check.
Other local organizations such as the Polish Club and the Shamrock Café have helped, but much more money is still needed.
A spaghetti dinner will be held Nov. 3 at Mount Carmel Hall in Enfield with all proceeds going toward Mary's treatment. The event begins at 6 p.m. Tickets are $20, and prizes will be raffled off.
I coulden't find anything from a truly credible news source... but i did find this quite interesting.
I don't know if this sort of radical treatment has been discussed here in any of the fourms so forgive if it's a re-post. http://www.rsdfoundation.org/en/Bret...archVideo.html
Then he undertook an experimental treatment - a seven-day coma in which he was pumped full of a drug called ketamine, which doctors use as an anesthetic and street dealers refer to as the recreational drug "Special K."
The experimental procedure gave him fleeting hallucinations, but it helped. "I can enjoy life better today," said Lovell, who is down to just one pill a day and can maneuver a computer mouse.
There are people who would love seven days on ketamine, non-stop!
But seriously. I have heard of this treatment before.
Last edited by enquirewithin; 13-12-2007 at 07:25.
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Ketamine Coma treatment for RDS
A new entry has been added to Drugs Archive
Description:
A report from CNN. Some chronic pain sufferers, suffering from pain with no real source known as Reflex Sympathetic Dystrophy are treated in by going into a 7-day ketamine coma to 're-set' the brain.
This is the story of one patient form the US.
To check it out, rate it or add comments, visit Ketamine Coma treatment for RDS
The comments you make there will appear in the posts below.
23-10-2007, 16:42
, non-stop!
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