I have not been on this site for about 2 years now as I felt too emotionally drained after caring for my husband. Good news is my husband has fully recovered and most remarkably, is EATING NORMALLY.
Sorry if this is a bit long but I wanted to tell you our story.
After treatment and two hospitalizations where he almost died (life support after getting Sepsis was the worst) he was still having esophageal dilations every 6-8 weeks! About 13 in all. Swallow therapy wasn't helping. Speech was fine. After visiting a quite renowned surgeon for a second opinion about the swallowing issue around September 2015 (although I'm not sure of the dates) we were told he would never eat again because the muscles weren't working, his nerves were dead and his epiglottis wasn't moving and he "might as well get used to it." (Needless to say this surgeon was an arrogant ... with a huge ego and thought he was the best thing ever!) My husband and I walked away from that appointment feeling so low and in such despair. When we got home, my courageous husband said "I WILL eat again, darn it!" And I got back on line and searched for anything I could find that would help him swallow again. What stood in my mind was that I had asked the question (when I was allowed to speak!) to the surgeon, "So because his epiglottis isn't moving, is THAT the reason he can't eat?" And his reply was "No, I've removed patients epiglottis before and they can still eat, albeit carefully." So.... I thought, let's get those muscles working....I found the "SHAKER" Exercise. Takes 5 minutes every morning. Within ONE week of doing that exercise, the Swallow therapist called all her colleagues in to show how Jack was improving. By November, just a few months later, he was starting to eat soft foods, liquid soups and such. By Thanksgiving he was able to eat his dinner! Soon after that, the Peg was removed. He had had the Peg for 2 years 8 months! Fast forward to today, and he's eating anything and everything and enjoying and appreciating every moment. He still does these exercises EVERY morning for 5 minutes, that's all. He does have to be careful, and cough up sometimes, but for the most part, it's an unbelievable improvement.
If any of you have any other questions or concerns, please feel free to ask me. We know it's a long, tough road you're all on, but there IS a light at the end of the tunnel. My love and blessings and healing thoughts to all of you, patients and caregivers alike.
Here is the link to Exercises that may help you. The SHAKER exercise is the one that helped Jack, maybe it would help others too. http://www.livestrong.com/article/360308-exercises-for-epiglottic-inversion/*** OCF MODERATOR NOTE ---- As with anything read here or elsewhere on the internet, use caution--- ALWAYS CONSULT YOUR PHYSICIAN BEFORE ATTEMPTING ANY TIP OR TAKING ANY ADVICE FROM PATIENTS OR CAREGIVERS WHO DO NOT HAVE MEDICAL DEGREES. ANY EXERCISE HAVING ANYTHING TO DO WITH A PATIENTS ABILITY TO SAFELY SWALLOW FOOD AND/OR LIQUIDS SHOULD BE THOROUGHLY DISCUSSED WITH YOUR PHYSICIAN PRIOR TO ATTEMPTING. MANY ORAL CANCER PATIENTS HAVE LIFE THREATENING HOSPITALIZATIONS DUE TO THEIR UNKNOWINGLY DECREASED SWALLOWING ABILITY AND SILENT ASPIRATION. A BARIUM SWALLOW TEST PREFORMED BY A QUALIFIED SPECIALIST IS NECESSARY IN DETERMINING IF A PATIENT IS ABLE TO SWALLOW SAFELY. ***