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!

Brian, thanks for posting. It's certainly potentially worrying for anyone who's undergone radiation. I hope everyone here at the forum reads this.

Dear Brian and Uptown,

Thank you for bringing this to light, though it is a tough subject to broach. I am very sorry to hear that there are people suffering from such a horrible disease, especially after battling OHANC. Brian, I am so pleased to learn the breadth of current research with which you are continually keeping pace.

Uptown, you have had such a rough go of things, but you hold up your chin and have an amazingly positive attitude. Your willingness to help others is evident in this forum. So, thank you.

It certainly makes sense that radiation scatter could affect the central nervous system and cause upper motor neuron disease. I do think that it is vitally important for any OHANC patient to report any symptoms or findings related to neurologic symptoms such as abnormal reflexes that one may see with a stroke or other post-treatment sequelae. Also, neurovascular symptoms such as those that could be linked to stroke or transient ischemic attacks to the brain.

I will keep my ear to the ground on this one and follow this thread.

Take care,
Kerri

For 3 years or so I've been dealing with progressive sensory polyneuropathy. My docs tell me it's idiopathic. And in my case, not having had chemo, the cause will likely never be known, nor is there a cure. The first neurologist I consulted was of the opinion that my radiation treatments were not causative. But still one wonders. It's a drag but I'm still glad to be here.

David, I would be nore than happy to hear about all that you are experiencing and to help yountry and find comfort in as many ways possible. Feel free to message me or email me any time. Much of what you are experienced is well documented and comfort in many ways is possible. You are now entering the phase of aftercare that can be the worst for some of us and treatable in the short term. It takes a lot of time, effort and perseverance.

David2 - cervical radiation exposure is a well documented cause of poly radiculopathy. Obviously everything in your body is down stream from that part of your spinal cord, and peripheral neuropathy is the first thing people notice. But the problem is that only recently did we have oral cancer patients with head and neck radiation living as long as they are (because of their HPV etiology and its 30% survival advantage). So most of the radiation oncology people, and neurology people are not aware this is happening, and know little about it. Your EMG test will show what is occurring, people that do not understand this causation will call it idiopathic. You may start to notice in leg muscles and other places you can see small patterns of twitches in the muscle when relaxed. These tiny nerves firing randomly in a pattern around your muscle are called florid fasciculations. They are seen commonly in people developing motor neuron diseases, and are very typical of ALS. (Don't let anyone down the road misdiagnose you with that based on any of this.) A MRI of the whole spine will initially show fibrotic tissues surrounding the actual spinal cord itself, and that fibrosis is the initial problem. Please continue to post about your experiences here as I am trying to collect enough patients to get a paper done about this, so that we can expose the treating medical community to the knowledge, and hopefully get better IMRT mapping near the cord to eliminate this issue in future patients when possible.

Brian, I have been treated for the last 8 years for Parkinson's disease, some say it could have been caused by Rads treatment and others say from my USMC service but the only agreement is, is that it started after I finished treatment. There is no family history. Mine as of now only effects my left side. Hope this gives you something to think about.Semper[Fi Bob

Not sure if this relates or helps, but I had a few EMG/Nerve studies, and see a neurologist on a regular basis only recently, and do have brachial plexopathy, cubital tunnel syndrome, spinal accessory neuropathy, sensory polyneuropathy, myopathy, and a few others related like toe drop, head drop, reflex loss, paralysis, atrophy, balance, falling issues, and such, which I just judge as one in the same, and needed no tests to tell me so.

My issues started or were exacerbated after chemo only in 2009, which resulted septic shock, cachexia, other major side effects, including paralysis for almost a year from the waist down, and then others like brachial plexopathy were from the numerous neck dissections when nerves, muscle, and carotid artery removed, and radiation totaling over 200Gy to the same area. I don't have carotid blockage shown from the 3-D ultrasound, thankfully.

I specifically asked if I had lower motor neuron disease, and was told no, but said I have so many complications it's difficult to say which is the cause.

In my case my EMG shows neuropathy. The Dr performing the test attributed it to the chemo and radiation. I have had severe cramping in my neck ever since my radiation to my tonsil, which has intensified in the 6 years since treatment.

Hi, Flip.
I started having severe cramping / charlie horse type spasms in my neck, under my jaw, and behind my head at the base of my skull (starting about 2 years ago). This past year and after a lot of appeals to my insurance company, I have started receiving Botox injections to these areas. The doctor does one side at a time because of the potential for undesired side effects such as problems with speech and swallowing and head drop. Fortunately one of my sides is much worse than the other so this doesn't bother me. I have to tell you that these Botox injections have been a godsend. I see a doctor who is in the palliative care department of my Comprehensive Cancer Center and he also works in the pain management clinic in the main hospital. The spasms are very common in the areas that I described and that you may be experiencing yourself. It's common for them to be a latent effect radiation treatment to the head and neck. You are not alone and there is help for these spasms which are debilitating to say the least. I hope this message helps you find the care that you need. Please feel free to send me a private message if you need more information.
Love in OCF,
Kerri

Hi Flip, I haven't been on here in awhile, but came back looking for information and noticed these posts and your comment about the severe cramping in your neck. My husband, an 11-year Stage 4A oral cancer survivor, was also having severe cramping in the neck. The right side of his neck, where lymph nodes and muscle were removed and a nerve cut, had scar tissue running down the side. The skin and tissue in the area was extremely hard and basically plastered down. This caused his head to lean towards that side, affecting his posture, and as I said, he had the severe neck cramping which happened almost every day. Due to another long-term issue that I will go into on a separate post, we decided to try out cold (low intensity) laser therapy on his jaw and neck. We started with a physical therapist through a doctor's prescription and then we were impressed enough with the results that we bought a cold laser machine of our own to use at home. This therapy really softened and loosened up his whole neck area and lower jaw area which had also become very hard. He could barely tolerate being touched on the neck before, and now he is much less sensitive. He tells me that his neck cramps have decreased by 75%, he can turn his head much further, and it is no longer affecting his posture much. This therapy is said to have many effects, one of which is to increase blood flow and improve vascularization. The downside of this is that it is a therapy that isn't widely known in the States yet, and though approved by the FDA for various things, isn't covered by insurance. U.S. chiropractors and physical therapists often have/use these machines, but we have found that MDs generally know nothing about the technology. The machines are also expensive to buy, thousands of dollars, but we have used it 5x a week for 6 months on my husband for many of his various long-term cancer-treatment issues and have had some good results. I am also a BC survivor with arm lymphedema, and the cold laser did a nice job with improving my lymphedema by quite a bit (though it didn't cure it). I also noticed that all my scar tissue from my BC surgery and radiation softened and normalized and loosened everything up quite a bit after my own cold laser treatments.

The cold laser therapy sounds interesting - glad it has given your husband some relief.
I wonder if it could do anything to help with swallowing problems due to radiation.

Hi, Connie.
It's great to hear that you've had such a wonderful result from the cold laser therapy treatment. I'm a physical therapist and I am aware of cold laser therapy however the hospital system where I used to work did not find sufficient evidence to warrant purchasing one. This was about 10 years ago though. At that time we had an inservice from one of the manufacturer's so I don't work all much about how works but I'm glad that it's work well for you I may consider it if I find that my colleague has had good experience with it and there are no contra indications to using it. There are sensors in the Carotid artery and that same area that control your heart rhythm and blood pressure. So I'd be worried about using the device right over or close to those areas. I'll ask one of my colleagues who uses it in her clinic to find out if there any contraindications for using it in such a highly vascularized areas such as the neck .

Thanks for sharing your experience!

I haven't been on the forum for a while but I post today because of a new symptom that my husband is experiencing. Not sure if this is a precursor to a more serious issue.

Within the last 2 weeks, Clark has noticed trembling in his hands which seem to be progressing every day. We both immediately attributed this to the delayed effects of radiation. He is 8 years out from head and neck radiation. We'll be making an appointment with a neurologist at Penn to find out what's going on.

Anyone else out there having similar symptoms? I love to hear from you. Thanks all!

Anita, I get something like that I describe as "bouncing" vs tremble. It feels like I have a band aid around my torso and the nerves buzz too.

Haven't been here for a while, but have many of the same issues posted above 10+ years post treatment. Dr Stubblefield (was at Sloan Kettering in NYC but moved to Orange NJ a few years ago) was a pioneer in this field, and helped me a lot. Maybe his papers will help. Lyrica also seems to help me... Here is another recent paper that can help explain things to your local Dr...

http://www.sciencedirect.com/science/article/pii/S1507136713010079

davew,

Maybe we discussed it before, that I've been also following Dr Stubblefield's work for a few years, including papers and video's, which make sense. It's too bad he left MSKCC, and although NJ is close also, it's not a travel option at this time.

He does have a book, "Cancer Rehabilitation: Principles and Practice, 1st Edition" which is out if my price range, like $250 lol. I keep meaning to see if one of the cancer centers here have it in their library.

Glad he helped you, and thank you for the link.

[quote=davew]Haven't been here for a while, but have many of the same issues posted above 10+ years post treatment. Dr Stubblefield (was at Sloan Kettering in NYC but moved to Orange NJ a few years ago) was a pioneer in this field, and helped me a lot. Maybe his papers will help. Lyrica also seems to help me... Here is another recent paper that can help explain things to your local Dr...

http://www.sciencedirect.com/science/article/pii/S1507136713010079

[/quote]

David to Dave (and, long after the initial post, to Brian): thanks for this interesting link. I'm in the process of testing for this very thing, with nerve conduction stuff done last week and an MRI scheduled for Thursday. Everything I was able to understand from that article leads me to believe that it pretty much nails down my issues. I'll write more about it once the MRI results are in and I've had a chance to discuss them with my doctor.

I'm 2 years out from HPV base of tongue. 35 Rads and 6 Cisplatin. Ive been dealing with lots of symptoms including Cervical Dystonia which I am getting Botox for and it helps. Ive recently (last 6 months) developed a form of neuropathy and a "stiffness" of muscles, mainly stiff forearm. Now I'm having muscle twitches all over my body, some are small muscles and twitch fast but others are large leg muscles that "activate, hold and release". I'm pretty worried I have ALS and going to see neurologist next week 2-18-21. Anyone else have these fasciculations or muscle twitches I am describing?

Wow, this is interesting. I have been having twitching in both arms this last 2 months and left leg has just given out 3 times too causing me to fall. I'm 20 years post treatment but I also have cardiac and pulmonary sarcoidosis with an ICD so they are unable to do an MRI. Waiting for results of head scan. Life just gets more interesting.

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.

Kris and Brian, hello from a ways back!
This topic is most interesting and I too am experiencing some issues. Some that are bothersome and some that I wouldn't have worried about maybe I should be worried.

While I feel like I'm doing pretty well overall I'm reminded that most of my doctor visits are reminders that they aren't familiar with long-term radiation survivors.

Kris, your comment of pulmonary sarcoidosis has just lead me to a Mayo article that in turn will be brought to my GP very soon. He has been struggling to explain what has been seen in my right lung on several CT scans. Additionally, about two years ago I started having irregular heart rhythms (PVCs) that were considered to be caused by a failing mitral valve. A year ago that valve was successfully repaired but the rhythm problems have not fully resolved. Now I read that sarcoidosis could be something to look into for that as well.....

Could I ask why you are not a candidate for MRI? I have two MRI's scheduled in the next month.

At any rate, I'm happy to see that both of you are still forging ahead. Brian I did read some of what you've been through recently too.

Mark

Kris, I re-read and see you have a pacemaker defib and that is why no MRI.