Pennsylvania Girl Endures Burning Pain from Rare Disease: Experimental Coma Treatment in Germany Offers New Hope for Relief
GILBERTSVILLE, Pa. — Imagine being tormented by searing pain every hour of every day. Consider what it would be like to endure a burning sensation so intense that the most potent pain relievers on the market are completely ineffective, leaving you with the feeling that your body is actually on fire. While this may sound like a movie description of Hell, it is a small glimpse of the real life suffering of Gilbertsville, Pennsylvania resident Lindsay Spengler (NewHopeForLindsay.com).
Once a straight-A student looking forward to playing softball in college, Lindsay has spent the past seven years completely incapacitated by two debilitating diseases – Reflex Sympathetic Dystrophy (RSD) and Porphyria. These rare conditions carry a variety of persistent symptoms including excruciating burning pain, extreme fatigue, dizziness, leg weakness, body tremors and intense headaches.
Lindsay, who is bed-bound and has been unable to eat, sit or walk since 2002, is plagued by indescribable pain twenty-four hours a day. She has endured numerous hospitalizations, visited countless doctors and attempted all of the treatments available to her in the United States but nothing has come close to relieving her pain and suffering.
But there is new hope for Lindsay in an experimental treatment that is available in Saarbrucken, Germany. As recommended by her RSD specialist, Dr. Vasko Gulveski, this treatment will require Lindsay to be place in what is called a Ketamine coma for seven days to effectively reset her body. According to renowned RSD specialist, Dr. Robert Schwartzman, of Hahnemann Hospital in Philadelphia, “The patients that we put in this coma are intractable. They have failed everything. They have failed all known treatments for pain. They absolutely have no quality of life. I don’t think there is a worse pain problem.”
Dr. Schwartzman states, “The theory is, the coma allows the constant throbbing pain connections from the body to the brain to reset like a computer reboot. For seven days powerful drugs will surge Lindsay’s veins. She will need a ventilator to breathe. This treatment has been effective to some degree for 30 patients, giving them a piece of their life back,” he said. Lindsay’s lead physician, Dr. Vasko Gulveski of Hahnemann Hospital in Philadelphia, is optimistic that the treatment will reduce Lindsay’s pain and help her to return to a more normal life.
Accessing this treatment will be extraordinary for the family, who estimate that costs for air ambulance, hospitalization and related expenses will run between $150,000 and $180,000.
“This has been a long and arduous search for relief for Lindsay,” stated Mike and Sharon Spengler. “We are hopeful that the treatment in Germany will restore Lindsay to health and restore her to life. We are grateful for the support of family and friends and God’s faithfulness to help make this happen.”
About Lindsay
A website has been set up at http://www.NewHopeForLindsay.com that features information about Lindsay’s ordeal. There you will find a detailed medical history, background on RSD and Porphyria and photos and information about Lindsay before and after she became sick. Information on where and how to send monetary gifts are also posted on the site.
[tags]Lindsay Spengler, Reflex Sympathetic Dystrophy, Porphyria patient[/tags]
About Aria Munro
ABOUT THE EDITOR: Aria C. Munro works in the book publishing industry and has been a content editor for the Neotrope News Network since 2004. Her black video iPod is most often shuffling Invader Zim episode vids and Thomas Dolby or Dead Can Dance tunez.
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