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How do I know if I have Idiopathic Subglottic Stenosis?

What signs or symptoms may make you suspect you may have Idiopathic Subglottic Stenosis. People who have experience in Idiopathic Subglottic Stenosis offer advice of what things may make you suspicious and which doctor you should go to to receive treatment

Do I have Idiopathic Subglottic Stenosis?

Idiopathic Subglottic Stenosis (ISS) is a rare condition characterized by the narrowing of the airway passage below the vocal cords, specifically in the subglottic region. It is called idiopathic because the exact cause of this condition is unknown. ISS primarily affects women between the ages of 20 and 40, although it can occur in individuals of any age or gender.



The symptoms of ISS can vary in severity and may include:




  • Progressive difficulty breathing: One of the most common symptoms of ISS is a gradual onset of breathing difficulties. This can manifest as shortness of breath, wheezing, or a feeling of tightness in the chest.

  • Hoarseness or voice changes: ISS can cause changes in the voice, such as hoarseness or a weak voice. This is due to the narrowing of the airway, which affects vocal cord function.

  • Recurrent respiratory infections: Individuals with ISS may experience frequent respiratory infections, such as bronchitis or pneumonia, due to the compromised airway.

  • Exercise intolerance: As the airway becomes more restricted, individuals with ISS may find it increasingly difficult to engage in physical activities or exercise.



If you suspect you may have ISS, it is important to consult with a healthcare professional, preferably an otolaryngologist (ear, nose, and throat specialist). They will perform a thorough evaluation, which may include:




  • Medical history: Your doctor will inquire about your symptoms, their duration, and any relevant medical history.

  • Physical examination: A physical examination of the throat and airway will be conducted to assess any visible signs of subglottic narrowing.

  • Laryngoscopy: This procedure involves the insertion of a thin, flexible tube with a camera (laryngoscope) into the throat to visualize the airway and vocal cords.

  • Pulmonary function tests: These tests measure lung capacity and airflow to assess the severity of airway obstruction.



Once a diagnosis of ISS is confirmed, treatment options will be discussed. The management of ISS typically involves a multidisciplinary approach, including medical and surgical interventions. Treatment options may include:




  • Medical therapy: Medications such as corticosteroids or immunosuppressants may be prescribed to reduce inflammation and slow down the progression of the stenosis.

  • Endoscopic procedures: Minimally invasive procedures, such as balloon dilation or laser therapy, can be performed to widen the narrowed airway and improve breathing.

  • Surgical intervention: In severe cases, open surgical procedures may be necessary to remove scar tissue and reconstruct the airway.



Regular follow-up appointments with your healthcare provider are crucial to monitor the progression of the condition and adjust the treatment plan accordingly. It is important to note that ISS is a chronic condition, and long-term management may be required to maintain optimal airway function.


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Fourteen surgeries from 1994 to 2005 including @ 8 microlaryngoscopies, 2 tracheotomy placements and removals, an LTR and a CTR. The story is very long and complicated.

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