Lymphedema in the neck after laryngectomy

Dear lynkidd,
I have a tracheotomy after having radiation, covid twice, etc. My vocal cords are bilaterally paralyzed. The lymphedema started up when I began using the humidifier with the chinstrap. Soon, I realized that any sort of trauma--even slight--would bring on the lymphedema. The chinstrap was causing the lymphedema to activate. One ENT had me try a newer type of trach device. it basically looks like a swimming pool plug and has no tube. It is supposed to keep the opening from healing shut. However, since there was no tube, I could not suction out the mucus very well. Also, getting it to "snap" (two little silicone tabs) into the opening, was difficult and painful. After wearing it for a short while, the lymphedema around my trach opening and neck puffed way out. I have learned to be very gentle in that area. So, no more chinstrap, and back to a regular trach-tube. Best wishes to you and yours.

Oh my goodness! my husband has been stating ever since he was told to use things to help it seems to make it worse like, the humidifier? Oh this would NOT be a good thing for him. and the every time Trauma I get it! we find that every time they scope him or go in to look he has swelling problems. Is ENT said there was NO WAY that was causing that!!!! I wish they had true Trach specialist that can help. #tiredofsetbacks

Dear stephanie101,
Here in Indiana, it gets very humid so in summer I don't use a humidifier. In winter, the type I use is one with a fan, the blower facing me. When the lymphedema starts in with its hard bumps/lumps and swelling, I gently massage the area. As time has gone on, it seems to lessen somewhat. Yet, it is true that any type of agitation will cause it to get so bad that breathing becomes difficult. I also wear the trach strap so that it is not too tight. When I told the ENT about the edema and the humidifier strap, he was in disbelief as well. It's crazy how sensitive that area can be. Hopefully, as time goes on, he will get better. Maybe he will get the dang thing removed! If it is only a mm stopping that, it seems likely. If the trach is causing the edema, then it is a catch-22 situation. You and yours are in my thoughts. All things positive!

thank you so much for validating everything that we feel also. These Doctors just don't understand or get it! and his ENT told him to NOT loosen the strap to where the trach will move around causing more issues for him. Well it's hard when you can't breathe buddy! Yes, whatever it takes we are getting this trach reversed. I do massage him in the nighttime. and that seems to help and calm his breathing. And it is ALL a catch 22 with all of it. thank you so much and still trying to keep it positive.

Stephanie,
At age 63, I just thank God for each day. I know there is a realm awaiting us all, and we will be graded upon this "test." Out here, so many people in their 30s have died from cancer. One-woman in her 30s with five younger children. One day she found a lump, six months later she was gone from this life. I sincerely hope and pray your guy gets the tube removed. One thing is sure, he won the lottery-of-life when he met you!

You are too kind, but I have found in this life of age 57 that we are here for one another no matter what. And yes, I have had so many lose their life and a few has survived it. We have to fight the fight if we want to live. I do look at my husband and say, thank you! He is alive and breathing and in our presence but truly wish the better life for him because he has been that hard working and supporting Husband, father and best friend in our lives. it breaks me............