Late side effects of radiation treatment for head and neck cancer

Thank you for sharing this information. It can be very difficult to find skilled help with these issues in some areas. I feel that our medical teams could be better at sharing information on the potential for late term side effects with us as patients. I love my medical team and they are fantastic but I wish they included a therapist and others well versed in dealing with long term side effects.
There is a Dr.. Stubblefield in New Jersey that others on Connect have recommended. He also has published articles on this subject.
We really do have to advocate for ourselves during a medical journey so gaining and sharing knowledge such as we do on Connect can benefit so many others. Thank you.

I had squamous cel carcinoma of the tongue and lymph nodes on the neck requiring a radical neck dissection then radiation. This was in 1997. It saved my life. I saw others who elected surgery only and the disease came back. Some of them died. Then in 2026 I was diagnosed with Afferent Baroreflex Failure which is when the communication nerves fail from the heart/blood pressure to the brain resulting in highs and lows in blood pressure. This ABF is a result of the radiation. Mayo was able to test and diagnose this. They are one of only a few places in the country who can do so.

I appreciate you sharing your story and diagnosis. I’ve had issues with my blood pressure and my local physicians have not really been able to help. Could you share any additional information on what is involved in the diagnosis process?

Oh and sorry I forgot one other question. Once diagnosed is there treatment options? Thanks.

At Mayo in MN. The neurology department schedules the test. It’s an automatic testing that includes the heat room with a body coating that gets baked on your body to see where your trouble areas are. The second step which is another appointment is an electrode testing, then breathing test and then a blood pressure test as the table you are laying on gets tilted at different angles and this changes your blood pressure. The third appointment is then a consult with the MD with the results and a plan for care. You may be advised to have a “wedge pillow” while prone sleeping and the MD will tell you how many inches your head should be raise (to regulate your blood pressure). The MD may tell you when to monitor your blood pressure. The MD may suggest a heart monitor for a period of time to determine the time of day your blood pressure changes significantly. The MD may suggest a time released blood pressure medication after the heart monitoring to keep your blood pressure stable. A word of caution that I learned by going to my local doctors and this was at a major university teaching medical school, They got their version of automatic testing only half right because they don’t do the full testing and they are not experts. Like I said previously only a few places in the country do this full automatic testing Mayo in MN. Stanford in California is another. This was per the MD in Rochester MD.

I'm in much the same boat as you. I had "Stage Four" Tonsil cancer in 1998. Left tonsil with a positive margin and 4 affected Lymph nodes. Treated at Emory University Hospital in Atlanta -radical neck dissection followed by 37 radiation treatments. Standard for the time I believe.

I have had a number of hypertensive crisis events over the past 10+ years resulting in ER visits, and modifications to my BP meds each time it seems.

Last November 2025 I was once more in the ER for hypertensise crisis, likely the worst event I had experienced. In the ICU the following day, a "non cardiologist" doctor doing duty as attending ICU monitor I guess, told me about Afferent Baro-reflex Failure for the first time.

I brought it up to the VA Cardiologist later that day, only for him to dismiss it and once more say my problem was simply "White Coat". He prescribed Valsartan twice a day and discharged me.

Two months later I had a repeat event and I went to Emory ER instead of the VA. After a few days inpatient at Emory I was discharged with Amlodipine 10mg. It has since been reduced to 5mg. At times my BP has dropped too low and I cut the 5mg in half, or skipped a dose completely.

Clearly my BP is not "exactly stable" as I continue to see large swings between the extreme highs and sub 100 lows. So what exactly did Mayo prescribe for you and how stable is your BP ?

I plan on sharing your description of your Mayo testing with my VA Cardiology group as well as pursue it at Emory, one of the most acclaimed "teaching hospitals" in the SE along with Duke & Vanderbilt.

Thank you so much for sharing your experience.

At Mayo Clinic MN. The autonomic testing is Thermoregulatory Sweat Test and Autonomic Reflex Test. If you are having an autonomic test done it is different than the few places like Mayo MN does. Like I said I had it done at a teaching medical school and it was only partially correct. They missed the ABF by 100%. My blood pressure is fairly stable so far and therefore I don’t need the time released medication to regulate it. The prone sleeping wedge helps significantly for me. The MD was spot on with raising my head 6” when prone. He figured/estimated the wedge per the reflex testing results. I’m blood pressure is regulated with enough salt in my diet throughout the day, plenty of water (100-120oz per day), staying cool and wearing a cooling vest when needed (before I heat up). I go to a senior gym 4x a week and do a body bike (6,500 to 7,500 steps per gym day). Lean diet, plenty of fruits and veggies. Zero alcohol. Vitamins approved by my Mayo MD.