Radiation esophagus after effects

By all means go to Rochester!!!

Hello @lori57216. Without re-writing all the information concerning my own journey with a tracheotomy, please go onto past comments on my profile. I had a tracheotomy placed approximately two years ago and it is the best thing for me. It allows me to breathe, plus easy mucous removal via suctioning or cleaning. At first, the suction machine was utilized daily. Then, a second ENT told me to remove the tube daily for cleaning. At first, it was scary. Soon, it was like brushing teeth...no big deal. If your sister learns to remove and clean the tube out with a brush several times per day, there will be no clogging. Also, (and my ENT knows) I do not wear an inner cannula. It is there to trap mucous but makes it very difficult to breathe. As long as she removes her tube several times a day for cleaning, the inner cannula is useless.
As for eating, if she can, she needs to have a swallow study done. While swallowing, an x-ray-type machine will record her swallowing mechanisms to see if they are working properly. I had a few done before my mechanism began functioning properly. In between, I did extensive throat and tongue exercises. They are tedious but do work. It took a good year for me to regain my voice and eating/drinking ability. The feeding tube fell off of me after three months. When the nurse told me to have it put back in, I said "no." Your sister needs to be determined to eat and drink again. As long as she can cough, some aspiration should not cause her problems. The longer she goes dependent on the feeding tube, the more chance she will never regain her ability to eat and drink.
If you or your sister have any questions, feel free to contact me. I wish you all the best!

Thank you for responding to my blog. I have sent this information on to my sister to give her hope and to keep fighting. Your story can help them see what might work for her too! They are at so frustrated at this point right now! Again thank you for sharing.

I agree and passed that on to them! Thank you!

@lori57216, I am sorry for not addressing your sister being in pain...This is very odd after this much time has gone by...over a year, right? She needs to go to another ENT to find out why she is having pain. The way you describe it, the pain is from around the opening in her neck. Could it be infected? Did the pain subside if they ever put her on steroids? In the beginning of this tracheotomy journey, for the first six weeks after the tracheotomy surgery, I was in pure agony. It hurt so bad I cried. Once the skin healed and toughened-up, it is now painless. I looked up your sisters' symptoms, and here is the information given:

Infection: The tracheostomy site or the tube may become infected by bacteria, fungi, or viruses, causing inflammation, redness, swelling, pus, fever, or difficulty breathing123. Infection can be prevented by keeping the site and the tube clean and changing the dressing regularly. Infection can be treated by antibiotics or antifungal medications, depending on the cause.

Bleeding: The tracheostomy site or the tube may bleed due to trauma, irritation, erosion, or ulceration of the blood vessels in the trachea or the neck123. Bleeding can be mild or severe and may require emergency care. Bleeding can be prevented by avoiding excessive coughing, suctioning, or movement of the tube. Bleeding can be treated by applying pressure, cauterizing, or surgically repairing the bleeding vessel.

Granulation tissue: The tracheostomy site or the tube may stimulate the growth of excess scar tissue (granulation tissue) around the opening or inside the trachea123. Granulation tissue can cause narrowing of the airway, obstruction of the tube, bleeding, infection, or difficulty swallowing. Granulation tissue can be prevented by using a well-fitted tube and avoiding trauma or irritation to the site. Granulation tissue can be treated by removing it surgically or with lasers, cryotherapy, or steroids.

Tracheal stenosis: The tracheostomy site or the tube may cause narrowing (stenosis) of the trachea due to scar tissue formation, inflammation, infection, or injury123. Tracheal stenosis can cause difficulty breathing, wheezing, stridor, coughing, or choking. Tracheal stenosis can be prevented by using a well-fitted tube and avoiding trauma or irritation to the site. Tracheal stenosis can be treated by dilating, stenting, or surgically repairing the narrowed segment of the trachea.

Tracheomalacia: The tracheostomy site or the tube may cause weakening (malacia) of the tracheal wall due to prolonged pressure, inflammation, infection, or injury123. Tracheomalacia can cause collapse of the trachea during breathing, especially during expiration. Tracheomalacia can cause difficulty breathing, wheezing, stridor, coughing, or choking. Tracheomalacia can be prevented by using a well-fitted tube and avoiding trauma or irritation to the site. Tracheomalacia can be treated by stenting, splinting, or surgically reinforcing the tracheal wall.

One thing that happened to me is the granulation tissue. It is excess skin that forms around the opening that needs removed. After the ENT removed this tissue, the pain was really bad at first. After it finally healed--knock-on-wood--it has been fine. I hope she gets another opinion, if possible...and soon.

Thank you for all the above info. I’ll pass it on!

thomason,
I believe you should be addressing oby9. They are the one who's sister is in peril but thank you for responding non the less.
Lori

@oby9, the information I meant for you and your sister, was mistakenly posted to another member. It is on this page! Hoping and praying for you and your sister. Take care!

Hi @oby9, I moved your question to the Esophageal Cancer Support Group here:
https://connect.mayoclinic.org/group/esophageal-cancer/
If you click the link, you’ll find many helpful and related discussions.

How is your sister doing? Were you able to make an appointment with Mayo Clinic?