low oxygen levels- ONLY CHILDREN! - Adults often have normal oxygen levels and Pulmonary Function Test (PFTs)- because of this, doctors may "brush it off" and not recognize TBM. YOU are your biggest advocate!
Activities such as coughing, laughing, and exercise will often make breathing harder
Indirect symptoms of TBM may include:
In addition to the symptoms associated directly with TBM, people may also find they have difficulty controlling their weight. This can stem from prolonged oral steroid use, or reduced activity due to symptoms of TBM. It is important to remember diet and exercise, while difficult, are crucial in maintaining ones overall health and well being. Ask your healthcare provider about exercises that can be tailored to your abilities.
People with TBM may also find their condition is worsened by other medical conditions, such as acid reflux. Acid reflux can be controlled by taking medications (either over the counter or prescribed) and by lifestyle changes. People with acid reflux find avoiding certain "trigger" foods (especially before bed), changing sleep position to either the left side or elevated, and chewing gum may help reduce acid reflux symptoms. People with acid reflux should mention this to their primary care provider, as well as their TBM treatment team.
Many people with TBM report they were actually misdiagnosed with other conditions, such as: Asthma, "severe" Asthma, COPD, or anxiety.
Below are some ways doctors may confirm, or rule out, TBM:
Dynamic Flexible Bronchoscopy
Dynamic Expiratory Computed Tomography (CT) scan- Dynamic airway CAT scan - A non-invasive procedure in which the patient lies still while X Ray images are collected of the patient's airways.
Swallow study- A procedure in which the patient remain's awake to drink and eat a variety of consistencies of food which are mixed with contrast. Images are then taken at certain points of the patient swallowing to determine if the patient aspirates while swallowing.
Laryngoscopy - Laryngoscopy is a procedure in which the health care providor looks in the patients throat to note any abnormalities.
Bronchoscopy - A procedure in which an instrument called a bronchoscope is inserted into the airways to see how the trachea is functions when the patient breathes in and out. The patient is under general anesthesia during this procedure.
Comprehensive patient exam - A complete health history and consult with the patient and family. It is important to bring a list of medications, questions and symptoms to this appointment to discuss with your healthcare team.
Pulmonary Function Test - A physical test in which the patient, while being monitored, is asked to complete several tasks, such as a 6 minute walk. This test gathers information about what the patient is capable of doing, and how the airway responds to activity.
Diagnosis of severe expiratory central airway collapse (ECAC) is based on the presence of >90% expiratory airway collapse on dynamic computed tomography (CT) and/or bronchoscopy.
Once diagnosed with TBM, treatment options vary and are specific to each person.
Treatment options may include:
Respiratory and/or pulmonary therapy- pursed lip breathing and exercises to help strengthen the muscles that help support breathing
A stent may be placed to see if symptoms get better during this phase of the stent trial, then a Tracheobronchoplasty may be completed for more permanent relief
Tracheopexy - This procedure opens up and supports the airway by suspending the back of the tracheal wall from the back of the sternum.
Aortopexy - A safe and reliable procedure that provides immediate and permanent relief of severe tracheomalacia. This surgery opens up the trachea by moving up the aorta (the body's main blood vessel) and attaching it to the back of the breastbone (sternum)
Treating TBM is a team approach. A team may include:
Cardiologists (heart doctors)
Child Life Specialists - pediatric only
Ear, Nose, & Throat (ENT) doctors
Gastroenterologists (digestive system doctors)
Radiologists (doctors who read medical scans like an X-ray)
Pulmonologists (lung doctors)
Physician Assistants (PA's) or Nurse Practitioners (NP's)
Speech & Language Pathology, including swallowing and feeding specialists
The outcomes for patients with Tracheobronchomalacia often depends on the underlying cause, as well as the care they receive. That is, the prognosis will vary greatly if the patient has been accurately diagnoses with Tracheobronchomalacia.
In children, the prognosis is often very good, as some, not all of the malacia (weakening) may get stronger as the child grows. Over time, a child's cartilage will naturally stiffen, reducing the amount of airway collapse. However, most children will still need medical intervention.
For adults, Tracheobronchomalacia tends to worsen over time. While the actual disease may not worsen, the patient's ability to respond and recover may lessen as age increases. Without medical intervention, TBM can be life threatening.