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Re: Post Radiation Myelitis

Re: Post Radiation Myelitis

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Posted by Julie on September 26, 2000 at 08:41:36:

In Reply to: Re: Post Radiation Myelitis posted by Pat C. on September 19, 2000 at 16:06:25:

:Pat,
I work in the medical field and closely with other physicians. While mom was still alive we were told by several experts that this "just does not happen anymore." So we hired an attorney to investigate and after review of her medical records obtained from the radiation oncologist and the hospital we found that the formula they used along with the hollow bite block placed in her mouth during radiation was inappropriate. There is usually a double check in place when the physicist calculates during simulation but we found out later the double check did not take place. So instead of 5500 she was given over 7500 to her neck. So the result was devastating. They basically severed her cervical and thoracic spine.
Which explains the neurological symptoms. It was 4 years September that she passed and I still research this horrible diagnosis. Have you been diagnosed with Radiation Myelitis? The reason it is so rare is because it is very uncommon. In the "old days" it was more common because they did not have the technology we have now.
Pat, are they treating your symptoms currently?
The reason that noone can tell you anything is because it is so rare. Keep me posted on your progess, just so your know there are less severe cases than my mothers and can stabalize for many years. So that should give you some hope. I was provided a graph with different stages of the Myelitis, my mom's being the mose severe. I would be glad to did it up and let you know where you are in the graph.
Julie

Julie & Dan,
: Thank you for your responses. Julie, I'm really sorry about your mother. How did you find out she was over radiated? I can't imagine a doctor admitting to that. As for me, it has now been a year since my left side went numb. There has been no change for about 5 months now, so at least it's no longer getting worse, but there has been absolutely no improvement. It's frightening that no one can tell you anything. Dan, I also have been able to find out nothing, at least nothing positive, and different doctor's tell you different things. Let me know if you find out anything, and I will do the same.
: Thanks again, Pat




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