Happy end with subglottic stenosis
Hi!
I am new to the forum and would like to share my experience with subglottic stenosis. Who knows... Hopefully explanation of this happy end may help someone else!
in 2010, I have been directed to a pneumologist to investigate a breathing problem while exercising. As soon as I started to walk uphill or to speed up, I became out of breath. Diagnostic: you have excess weight. Start a diet and it will be ok.
2011, the problem was getting worse and it was more and more difficult for me to breathe (despite some weight loss). the same pneumologist did further measurements and diagnosed a vocal chords dysfunction, saying that my vocal chords were not operating in the right way and were actually blocking the air intake. Proposed treatment: spray for asthma, which did not actually work. I went on this way, changing the kind of inhalated product from time to time, with no success. My voice started to change drastically.
Summer 2012, I started to get severe pain in almost all the joints of the body.
March 2013, Several lobular panniculitis appeared under the skin of my arms and belly. My immunologist started to try to put together all my symptoms, including chronic dry nose and heavy nose bleeding, and 4 months later, Wegener diagnostic was defined and Plaquenil (2x daily) and zythromax (1200mg 1x per week) treatment started. My breathing problems were however not considered linked to the Wegener, as there was already a diagnostic for that. However, the problem was getting worse and worse.
October 2013, as my breathing prolems were getting really severe I got the advice to do hypnosis sessions, which are known to be successful in relieving vocal chord dysfunction. At that time I was almost unable to walk, even slowly and on a flat path without suffocating. My voice was almost gone and I needed to have colleagues repeating loud what I tried to say in meetings.
March 2014, the situation continued to get worse. I started to suffocate even while sleeping. I spent hours trying to find some air in my bed. The hypnosis sessions were going on but did not really work, except for one thing: by doing self hypnosis sessions while I was suffocating, I could relax and calm down the spasmatic behaviour of my vocal chords and managed never to lose consciousness. These heavy symptoms brought my doctor to some kind of panic and he gave me 50mg Prednisone per day. In less than 12 hours I was able to walk and breath again. I could even sing! However, after the 10 days treatment, the problem came back in less than 1 days. A long journey began to get an appointment in the university hospital with a specialist of the vocal chords. Good point, I could continue with the Predinisone, which helped a lot and made me feel better than several years ago.
June 2014: finally the appointment with the vocal chords specialist. Looking with his small camera into my throat, he found a huge subglottic granulome blocking 60% of the space. He could not even imagine how it was before the high dose of Prednisone. His message was clear. I could well have died when I was suffocating in my bed. A few days later I got back to the hospital to get an injection of cortisone directly in the granulome. This was like a miracle. I responded very positively and the granulome started to disappear. The discovery of this granulome also triggered the start of methotrexate treatment (intramuscular injections 20mg/week).
Now the granulome is quiet. It is still here and can be seen on the scan, but it does not block the air. Inflammation gradually continued to decrease and is now almost gone in the throat. My voice is back, I can walk uphill full speed and started to do sport again. This is really a new life. The doctor will check that the granulome does not grow up again and, if it does, he plans to kill it in the same way. Methotrexate also contributed to relieve the other symptoms of Wegener. The side effects are reasonable.
The message of the vocal chords specialist is the following: vocal chords dysfunction can be mixed up with other problems like subglottic stenosis. The vocal chord dysfunction should be the last diagnositc after checking if there is stenosis, not the first diagnostic without checking any other possible cause...
All the best to all of you!
Sophie
