The aftermath of my wife’s car accident has left me rather aware of the hell that folks with different forms of severe chronic pain syndromes live through, and the lengths to which many must go to find an understanding doctor, much less effective treatment.
In my wife’s case, she’s been able to get some relief from some of her fibromyalgia/TBI issues via an experimental occipital nerve stimulator—a welcome relief from doctors answering questions about prognosis using the phrases, “I’m sorry” or “medical science is advancing rapidly….”.
However, some folks aren’t so lucky, and have to leave the country for treatment that isn’t available stateside yet.
Via the Windsor Locks blog at CT Local Politics, I encountered this article in the Journal Inquirer about one such individual:
Remotti has been bedridden for months as the result of reflex sympathetic dystrophy. The rare condition causes her nerves to misfire, sending constant pain signals to her brain.[...]
When interviewed in October, Remotti was able only to speak, wiggle one of her thumbs, and move her head. Contact with anything, from water to wrinkled bed sheets, caused her terrible pain, and every day she risked violent spasms that could endanger her.
On Friday, Remotti said she has not improved. Medicine has done little to help, leaving the ketamine coma treatment as her final hope.
The treatment is illegal in the U.S. [...] Remotti will have to fly to Monterrey, Mexico for the treatment, where doctors will induce the coma by steadily giving her doses of ketamine. She will wake five days later.
The Remotti’s are working on raising $200,000 for the treatment and the associated travel. A local car dealership has donated a Pontiac G5 to be raffled off; raffle tickets are available at www.maryswish.com
The treatment itself is an interesting one. We read up on it about a year ago (although we were aware of it being available in Germany), but the doctors we spoke to didn’t think it was indicated for my wife’s situation. However, for folks with reflex sympathetic dystrophy, it’s reported to be very effective in providing relief.
Sadly, it doesn’t seem to be quite as effective when it comes to jumping through the FDA’s hoops….
1 response so far ↓
1 Melissa Remotti // 14 Dec 2007 at 12:07 pm
Thank you so much for picking up on my sister Mary’s illness and all that we are doing to try to ensure that she gets the care that she needs. We truly appreciate your assistance in raising awareness for not only her journey, but the journey of others, like you and your wife, who are battling illnesses which the U.S. has not made a commitment to help.
Best wishes to you and your wife on your journey and please have a joyful holiday season!
Melissa Remotti