@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.