I was about eighteen years out from pre IMRT Radiation when my swallow went. Nerve damage from the radiation. It’s largely systemic, called polyradiculopathy. This is scatter radiation to the cervical spinal cord caused. Of course everything in you body is downstream from that point, and I and many others have these symptoms with our speech issues, swallowing disfunction or dysphasia, and then the distant issues started like numbness in my toes, which became my whole feet, and now a couple years later that is extended up to my knees. I’m still walking as I have some proprioception left, but it’s an odd feeling. There is occasionally some associated nerve pain with all this which is tolerable when it occurs without meds. This is all part of a syndrome called dysautonomia which has other nerve complications. You can read about it in the complications of treatment section of the OCF website.

Included in the issues are widely variable blood pressure, which is problematic with extreme lows and highs. Many of us had our necks radiated as we had impacted nodes there. In the carotid notch there is a group of nerve fibers that are baroreceptors, and they tell your body what you blood pressure should be. When destroyed by the radiation or surgery your body has no idea what the blood pressure should be. So it swings all the time from low to high. This is baroreflex dysfunction. All these issues are radiation induced. It is not uncommon for a person to start with one, and have this over years expand into this constellation of issues.

So speech and swallow are central parts of this. There are no treatments that I am aware of that contact and correct this. Just alternative ideas. Permanent PEG tubes are common to avoid repeated aspiration pneumonia, which will eventually become antibiotic resistant and deadly. So this is not something to think you are going to live with for years. For those that end up there I would be happy to help you navigate eating normal blended foods for optimum nutrition and health, not that canned crap from the pharma companies, through you PEG which I have recommendations for as well. Having tried various types and have now found one which you can replace yourself easily and painlessly at home, and doesn’t dangle and be a constant problem. I can give you sources to buy them online as well.

I gave up decades of lecturing at cancer conferences and universities as a result if all this, no one can understand the voice I have today. I’m permanently nothing by mouth liquid or solid. I’m told by numerous neurologist doctors that I work with through the foundation that this will continue to decline as the myelin sheath on my nerves continues to degrade from the radiation two decades ago. That by the way also created osteonecrosis in my mandible requiring bone from my leg to be moved to replace the dead bone in my jaw. That was a big deal 9 hour surgery. The first attempt failed because of the radiated blood vessels in my neck and a week later it was redone with a different approach. I’m happy to answer any direct questions. Because if my work load at OCF I’m only on the board a couple times a week, but I will try and answer any you have. Brian