Wednesday, January 31, 2018

Patient Story: Brenda Has Her Life Back

Brenda-patient

Condition: Idiopathic subglottic stenosis

Procedure: Resection surgery

Hometown: Wausau, Wisconsin

On my 40th birthday, I was diagnosed with idiopathic subglottic stenosis (ISS), a narrowing of the trachea right below my vocal cords. The diagnosis brought me tears of joy, as I finally had a name for the bizarre cluster of symptoms I had been struggling with, including a cough and severe shortness of breath with exertion.

A local ear, nose and throat (ENT) doctor dilated my trachea which gave me immediate relief. Unfortunately, the relief did not last and I was dilated two more times over the next year and a half.

I was searching for answers when I found a Facebook support group. Several women in the group had undergone tracheal resection surgeries with Dr. Mathisen with excellent results. They could speak without wheezing. They were doing half marathons. They had their lives back.

I mailed Dr. Mathisen my medical records and within two weeks he emailed me with a quick note that said, "I think we can help." My Wisconsin-based insurance provider, which did not permit out-of-state medical care, made an exception and agreed to pay for my treatment at Mass General.

I flew to Boston for an evaluation and scheduled my resection surgery for October 2012. Unfortunately, my surgery could not be done because I had an active infection and inflammation in my trachea. Dr. Mathisen would not do surgery unless the conditions were perfect to maximize the likelihood of success.

I was sent home only to return in March 2013 for my surgery. I was in Boston for two weeks, including nine days in the hospital. Dr. Mathisen and his staff were extraordinary in ensuring that I was comfortable and well cared for during my stay. 

I am almost five years post-surgery and have not needed any additional care or treatment. I have blogged about my journey and connected with many others who have been diagnosed with ISS over the past few years. I highly recommend that they contact Dr. Mathisen. I am thankful for him every day. He gave me my life back.

Back to Top