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Thread: Happy end with subglottic stenosis

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    Default 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

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    That is awesome news that you finally got appropriate treatment, but why were you not referred to a laryngologist to make sure there were no blockages?

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    Great to hear such good news. This will give hope to other stenosis cases suffering from similar symptoms. They could start at the vocal chord specialist and rule in/out vocal cord involvement.

    Rose.

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    Quote Originally Posted by mrtmeo View Post
    That is awesome news that you finally got appropriate treatment, but why were you not referred to a laryngologist to make sure there were no blockages?

    Nobody ever had the idea to go and see under the vocal chords...The docotors appologized deeply for having missed this. Probably the initial vocal chords dysfunction diagnostic looked reasonable and thus was not reassessed after the Wegener diagnostic...

    My learning here is that we should really insist that the doctors double check if any of our strange symptoms can be linked to Wegener...

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    Quote Originally Posted by Taupinette View Post
    Nobody ever had the idea to go and see under the vocal chords...The docotors appologized deeply for having missed this. Probably the initial vocal chords dysfunction diagnostic looked reasonable and thus was not reassessed after the Wegener diagnostic...

    My learning here is that we should really insist that the doctors double check if any of our strange symptoms can be linked to Wegener...
    The problem is we as patients don't know anything about our disease until we start searching and too much damage can happen during this learning time.
    My mom has mpa and had wheezing and mucus in her throat, so I went to a laryngologist who used a camera to show her vocal cords and trachea which was normal except for a small amount of redness.
    I wanted to be safe than sorry.

    This laryngologist says by the time his patients come and see him, they are very well educated by the disease, so this shows few drs know how to coordinate which specialists to send their patients.
    Here is the video on subglottic stenosis
    http://www.wegeners-granulomatosis.com/forum/tracheal-stenosis/4218-video-treatment-methods-subglottic-stenosis.html#post88733

    Last edited by mrtmeo; 11-01-2014 at 03:13 AM.

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    Thanks for sharing your story, Sophie. It is a shame that they did not link the vocal chord problems to the Wegeners sooner and I also question why you did not get MTX or another standard WG drug a lot sooner after your diagnosis. I'm glad they were able to zap that granuloma and relieve that problem. It is not uncommon even for good doctors to be in the dark about what to do in these cases.
    Anne, dx'ed April 2011

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    Sophie welcome to the forum and thank you for sharing your story. I image that before the granuloma was found it must have been pretty darn scary. I'm glad they finally figured it out. I hope that things continue to improve for you with your health.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Hi Sophie and welcome.

    You have shared a great experience (well not so great) that will hopefully help others for years to come.
    Thankyou and thankyou for the point form set out, which was easy to follow.

    I'm just sorry that you had to go through that.

    I also hope that your health continues to get better and remission is around the corner.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Quote Originally Posted by Taupinette View Post
    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
    Sophie,
    So elated to read someone here has had a happy ending. Thank you for sharing this.

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    I just got diagnosed with trachea stenosis and this definitely makes me feel better some stories on here scare me more than help me but this definitely helped me be strong. I really appreciate this post!


    Sent from my iPhone using Tapatalk

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