So I have come across a couple of patients that have developed an unusual problem and I am thinking that the odds that two head and neck radiated patients developing this relative rare and deadly issue is more than a coincidence. So I am putting this post up to hopefully attract the attention of any others that have heard or know someone with a similar experience. Both people have asked me not to use their names.

14-16 years out of treatment they have been diagnosed with motor neuron disease, commonly known as ALS, or other equally terrible and deadly names and syndromes, that there is no treatment for and causes a drawn out degradation of mobility, then speech and swallowing, and finally respiration where subsequently death occurs. So cane to walker to wheelchair to PEG tube to loss of speech, assisted breathing to death. Time from diagnosis to death is usually under five years, but about 5% make it out to ten, but severely incapacitated. Not a pretty disease, and medicine doesn't know much about it. It can be upper or lower body or both (these are both). In the literature there is good data on patients who have had radiation near the pelvic region for testicular and prostate cancer years later developing lower MND/ALS that is progressive. I am thinking that while this is not widely looked at in people that had head and neck radiation, that scatter radiation or radiation that was not highly targeted (before IMRT) would impact the cervical spine, just like it did the lumber spine in the cases documented, and if that were so upper and lower body MND would be the result. It is just too much a of a coincidence that two head and neck cancer patients in otherwise normal health, years out from treatment would have nerve degeneration and become ALS patients. So any one who has heard anything about this, please reach out to me, we may have stumbled onto something that is very important; but two data points do not make the argument. Radiation induced motor neuron disease.

Based on some data I reviewed presented by Van der Sluis, Wolfe, etal, even cumulative doses of 45 Gy and higher with breast cancer patients receiving radiation from the sternum up were candidates for motor neuron disease diagnosis. Thank you for bringing this up, Brian. I won't be shy, I have delved into this since 2007 and I have even tried to encourage Wolfe to reopen the study in hopes of identifying biomarkers to be able to try and predict outcomes like mine before the treatment plan is final. England is doing this and I tried to get involved as a patient advocate.

As you stated, not enough data points to generate interest. By the way, I happen to be a person that has battled this malady since 2007, while the majority of those studied were beyond 10 years, as high as 20 years out. If anyone comes forward and you can get any action from the medical community, please include me in any way possible. One question I have searched for an answer to is how do we measure an adequate supply of lower motor neurons? If damage to the anterior horn is truly the truly the etiology, there has to be someone willing to research this.

Thank you for this post!

We have some similar neurological issues. ALS is the most common motor neuron disease, but for those of us that had radiation 20 years ago, the same symptoms are more likely from dysautonomia. There is a section on the constellation of problems that this radiation related damage can cause in the treatment section of the website, complications of treatment.