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Thread: Prolonged Subglottal Stenosis

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    Default Prolonged Subglottal Stenosis

    I just had my 3rd successful bronchoscopy to fix my subglottal stenosis... I have been blessed with an excellent ENT who specializes in treating WG patients with stenosis... but it's getting kind of discouraging. This is the third time I've had surgery (dilation, laser removal of granulomas, steroid injection in the trachea) within the last 7 months. Does it get any better??

    I've also done some reading online about the treatment of stenosis. It sounds like, the more they go in and fix it, the more damage is done to soft tissue. That makes sense... but is this permanent damage? Anyone knowledgeable about this??

    Btw - for anyone else in the near vicinity, the ENT is Lucinda Halstead at MUSC in Charleston. Definitely a two-thumbs-up recommendation!

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    My Tracheal stenosis was TERRIBLE for years and years, but i have to say, after many dilatations and immuno suppression, my breathing is MUCH better.

    The stenosis is still there, but I can certainly live with it like this.

    I hope it improves for you toox
    Wegeners Granulomatosis diagnosed May 1995. Tracheal Stenosis since 2000.

    Proud mum of 3 beautiful girls, post cyclophosphamide (so it really can happen!) xxx

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    What were your symptoms for the tracheal stenosis? I've been having something a choking sensation but not in my throat; more in the upper chest area. My rheumy just had me do another CT to check it out, awaiting results.

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    hey capbayan!
    this is ticklytoes and this is very interesting...i also have subglottic stenosis and recently as my rheumy was tapering my prednisone, i had an acute flair up and the opening in my throt had shrank to the size of a straw...5mm is all. Super scary! I am from tennessee, and so i spent a week in vanderbilt hospital as a result of a tracheotomy. the dr here said thats all he would do because with active wegeners the dilation, removal, injection, etc would just cause more damage in the long run...right now my wegeners is considered active...is yours? are you in remission and still having problems with stenosis? i am looking for answers as well. If you are in remisson, what medicine helped you to achieve it? i have had my trach now for 3 weeks and thats 3 weeks too long...be glad you havent had to have a tracheotomy. its horrible. I am 27 years old and have a 1 year old son. its really hard dealing with all this. i dont have time to be sick! i loo forward to hearing from you!

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    Ticklytoes -
    No I am not in remission yet, though things have been going well and we have been decreasing my dosages of pred & cytoxan lately. I actually had 4 surgeries on my airway last year, between February & October. The first time, my doctor went in and refused to do anything since it was so small and near my vocal chords. He conferred with some other local ENT's and referred me to Lucinda Halstead at MUSC in Charleston. She took one look and told me I would need a trach because my airway was the size of a 6-month-old (I think that's about like 5 mm)... thankfully they were able to manipulate all the tubes so that was avoided. When I woke up, I was so relieved that I didn't have a trach that I started crying! Anyway, I don't know if there's any way you could work it out to see her, but she is an excellent doctor. She has been specializing in the area of subglottal stenosis since the early 90's, I think, and is an expert at the surgeries. I asked her about long-term damage due to the laser, steroids, etc, but really there is no other option besides a trach, so there's not much that can be done about it, other than praying and hoping for the best.
    Elizabeth J.
    Officially a Weggie since April 2007

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    I too have tracheal stenosis. My first surgery was Oct 20, 2008 and I do have a trach in. After 3 surgeries, I go back to the ENT tomorrow (the 26th of FEb) and am hoping they will have a date that I can get the trach out. Although, I cannot count on it as I was onlyu diagnosed with WG about a month ago.
    My breathing is much better and I would love to look somewhat "normal" again.
    Lisa Coffeelover

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    Default tracheal stenosis

    hello lisa-
    i couldnt help but notice that you too have a trach...so could you give me the story behind how it all happened? i saw where you said you had 3 surgeries...what type surgeries are you talking about? i would love to hear more about it. Are you on any meds? are you in remission? I too have a trach. I went to the ent yesterday and he told me he wouldnt perform any dilations until o was completely off my meds...i think i may have to look for a second opinion, bc at this point, i dont think that i will ever be completely off meds, and if so, not soon enough to suit me in order to get the trach out...please let me know any info...thanks and i look forward to hearing from you. btw, what did the dr say today? nicole

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    ticklytoes,
    I am sorry I did not respond sooner, I did not check this thread after posting on it...so I hope you get this.
    My first surgery was to put the trach in and open up my airway.
    The other two and I will have another one in June, are to scrape the scar tissue and take pictures to monitor the progress or lack there of.
    So far the tracheal stenosis surgeries seem to be successful and I am hopeful that I may get my trach out after 7 months sometimes in June. But with WG...you never know what is going to happen.

    I was diagnosed with WG two months after my trach surgery. My own fault for not consulting with my rhuemy when I was having breathing trouble. I assumed (wrongly) that I was having allergy and asthma type problems as they both run in my family. I assumed (wrongly again) that these symptoms would eventually go away with allergy and asthma prescription meds and with the change of the seaons. (we have lots of seasons here in MN that affect us allergy sufferers)
    So I did not go to see my rheumy until two months after surgery, but as soon as she finished repromanding(sp?) me, she got right on the WG board and immediately started testing and giving me the meds needed to hopefully slow the progression of WG and gave me some hope on getting this in remission within a year?
    So now I wear a trach, I hate it! But I have had it now for 5 months and it really does not bother me as much as it used to. Let's just say I am used to it and am working on that "new normal" attitude. If I could choose between the trach and prednisone, I would gladly keep the trach and get off the pred, but that is not a choice I have at this time either.
    I am now having fun "blinging" up my trach. My husband has been sewing me new neckbands and a friend is creating some jewelry. I have bought pieces of jewelry that I attach to match my various outfits and this just makes my creative juices flow and makes wearing this thing much more tolerable.
    Why do you have a trach. Stenosis, I am guessing. Is it because of WG?

    I hope this has helped you some. We should stay in touch as we are sisters in trach hood!
    Lisa Coffeelover

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    we are sisters in trach hood!
    Lisa Coffeelover[/quote]

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    Lisa,
    i am so glad to hear that you are getting your trach out! YAY! I wish i could say the same...my dr at vanderbily said he wouldnt do anything to my throat until i was tapered down to 2mg of prednisone...im on 9mg now. wow...it must be a great feeling knowing youre gonna be free soon. right now they are working on getting me fitted for a stoma stent, a more low profile, clean and collarless trach. i would love for them to tell me i can get this thing out! As of last week, my bloodwork came back as CANCA negative, ANCA negative, and PR3 negative....officially in remission! Whoo hoo! Trach removal is somewhere in my future...i just know it! let me know how things go...love and prayers, nicole

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