The story of Emily
Living with Idiopathic Subglottic Stenosis
My journey of Subglottic stenosis started in 2019, as I began to experience shortness of breath and stridor (loud wheezing with breathing). I bounced around to various specialists, started using inhalers as a diagnosis of asthma was given. However; none of this seemed to ease any discomfort. I saw many different doctors, had all the asthma tests and CT scans with no luck.
I happened to be put in contact with a speech therapist, and by chance I saw her with an ENT and with a scope of the vocal cords they found the stenosis. My airway was 70% closed at this stage, I ended up in the ER due to rapid heart rate and inability to breathe.
I had my first dilation in March 2020, hoping this would solve my problem and I would be off on my way. However, my stenosis was intent on staying around with symptoms reoccurring almost immediately after surgery. Unfortunately my first surgeon was pretty useless, had minimal patient care and interaction and wasn’t interested in this reoccurrence or difficulty.
Now I knew the condition I suffered from I did further research, gathered as much information as I could and got a referral to the Perth ENT clinic for a second opinion. It was in this part of my journey I met my current surgeon, Dr Hayley Herber, who has been nothing but a god send. Whilst we navigate my challenging stenosis, she has been incredible. I had my second surgery in September 2020 and had my nose turbinence done at the same time to provide more breathing capability. This was a traumatic surgery, I struggled with tachycardia post op and was very uncomfortable with my nose being blocked and sore throat. My surgeon did more investigation than the first ever did, and determined possible cause of stenosis being bleach I had ingested as a toddler (yes, I gave my parents the fright of their lives from a young age). This helped explain a potential cause, but no indication as to why it had been dormant for 22 years of my life since.
I had hopes that would be my last surgery for a while; it took about 2 months to fully recover. I then found myself in December, with the stridor and shortness of breathe returning back at the ENT. A lot earlier than our planned revision of April. Another scope confirmed our worst fear; the stenosis was re-emerging at a quick rate. I was booked in for another dilation for February 2021
I have just had my third surgery, whilst the procedure went well and I am home recovering. The daunting experience doesn’t get any easier for each time you go. And unfortunately for me, it won’t be my last.
My incredible surgeon and myself are going to try a series of awake steriod injections. Apparently a similar feeling to being waterboarded, but they are supposed to help keep the scar tissue less reactive and aim to reduce the frequency of surgery. I am currently having one surgery every 6 months and my quality of life has greatly diminished over the last 2 years.
However, I am hoping to get back my active lifestyle back as we get a better grip of the stenosis, with the support of my family, partner and surgeon I’ve got a great group of people helping me along the way. Having my life turned upside down by a rare condition, that will greatly change the outcome of my life as I will forever be navigating the difficulties of stenosis but I will not give up. I have many hopes and dreams, for an active and fulfilled life and all the things I wanted to do, I will not let go of those easily. I find inspiring to be apart of this group of people, us stenosis sufferers, because we all encourage one another to keep going and even just a day of forcing yourself to keep breathing is an accomplishment!