How do I know when I can get off my feeding tube?

@skippy. Here is a link to a few articles concerning how the red-light therapy helps heal tissue after undergoing radiation: Just right click and click on "go to."
https://blog.tracydonegan.org/blog/how-red-light-therapy-is-revolutionizing-cancer-support-relief-for-oral-mucositis
https://www.redlighttherapydigest.com/red-light-therapy
How often should you do therapy?
The "how often" varies wildly depending on your specific condition. Most people doing Swallowing Therapy (with a Speech-Language Pathologist) are often asked to do their exercises 2 to 3 times per day, for about 10–15 minutes each session. As for me, I bought a Neutrogena Red-Light Wand (older) off eBay for $20. They still have a few on there. In the morning and at night before bed, I would wave it around the back of my throat and also on the outside neck area. You cannot feel anything, not even warmth...so it feels like you aren't doing anything! Maybe my function would have returned in time without the red-light, but it is proven to accelerate healing.
I am so sorry you got a double whammy. Keep up the good fight! I pray you regain your function.

Good morning, Thomason thank you so much for the links and the name of the older Neutrogena Red-Light Wand. I was just thinking about asking you for the info or upload a picture. I'm doing the swallowing therapy also exercise @ home working the muscle etc. For me it's very hard due to me producing so much saliva. Thanks for the prays. 🙂

Hi @thomason

How long did you use the red light therapy with each session 5 mins or 10 mins etc?

Thanks,

Rob

@roblem, the wand has a timer (you cannot see it). I believe it would stay on for 2 minutes. Then it beeps and shuts off. Many times, I would turn it back on for a few more minutes. All in all, combining the morning and evening treatment times totaled about 8-10 minutes. In addition, not only did a red light beam out, but a blue light was below that. The blue light supposedly kills bacteria. Never stare at either beam! I found a few on eBay under these search terms: "Neutrogena Light Therapy Acne Spot Treatment NEW, OLD STOCK, SEALED." There is a photo of the device below. There are many wands for sale nowadays. Best wishes.

Thanks @thomason

One last question, do you still use the red-light therapy today even though functions have already improved? Did you completely stop using it? or just reduce it to a few times a week, etc.?

@roblem,
A Journey of Resilience
It is no problem! I should use the therapy, but I do not. Some days I have trouble swallowing more than others, and it might still help. My vocal cords were paralyzed from radiation and having severe Covid twice—once specifically during my head-mask radiation treatments.

Trying to hold back coughs and remain still during those sessions was an exercise in doing the impossible. Although my functions returned after approximately one year, air intake became increasingly difficult. As that progressed, it felt as if I were drowning. Just bending over to pick a dandelion (which are nutritious and tasty!) would send me near death's door. The tracheotomy surgery couldn’t have come soon enough.

The Swallowing Incident
Even with the surgery, swallowing remains difficult. A few months ago, I was eating oatmeal when it became completely stuck. Usually, a big gulp of water helps, or I have to bring a bit of the food back up to try a smaller bite.

This time, the food was further down and hit a "wall"—even water would not pass. I remember thinking, "How can I be choking on food, yet still breathe?" It took many head turns and deliberate gagging to finally dislodge it.

An Unexpected Discovery
After that incident, I researched how it’s possible to choke while still breathing. The answer was shocking: Because of the tracheotomy, it is almost impossible to choke to death. At 66 years old, I am still learning! While I was fascinated, the incident gave my husband a severe panic attack; I felt so bad for him.

The Power of Red-Light Therapy
I still firmly believe the red-light therapy helped a great deal. My ENT always remarks during my periodic scopings that it is a miracle my voice has not changed at all. You would think that paralyzed vocal cords would prevent a person from eating, drinking, or speaking entirely!

A Call for Research
As the moderator wrote, doctors need to do more research on this therapy, especially for people like us. Although our lives were gratefully spared, the treatments leave behind residual damage. If there is a way to lessen that damage, it needs to be promoted.

Please do not hesitate to ask any questions, and please document your own journey! As for me, I can't wait for Spring to get back into my huge garden and start push-mowing the lawn again! The tracheotomy is the best thing that ever happened to me.

@thomason

So you stopped completely doing any more red light therapy?

@roblem, yes, I stopped. The tissue has healed already, so I don't see how it could help anymore. Some people have had throat parts fuse together, so maybe the therapy helped prevent that. Mornings and evenings I waved the wand around before the radiation treatments too.

@thomason I have not tried red light. But I see the Cancerrehabpt.com recommends it, too! Gotta find an economical one. Suggestions??

@sandy8043 Hi! If you scroll up, I placed a photo of the wand on eBay and a search term too. There were a few on there...but they are about ten years old now, advertised as "new, old stock, never opened." There are several newer ones on the market now...If you do want the same one as I used, make an offer! They are asking too much! Please update if you do use red-light. Maybe if enough people try it, the doctors will take more notice. Have Happy Holidays.