User Tag List

Likes Likes:  0
Page 9 of 11 FirstFirst ... 7891011 LastLast
Results 81 to 90 of 105

Thread: Subglottic Stenosis - What's the recovery from the surgery like?

  1. #81
    Join Date
    Feb 2014
    Location
    Pennsylvania, USA
    Posts
    49
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Vdub, sorry to hear you're dealing with subglottic stenosis. Did your ENT give you an estimate about what percentage of your normal airway you're working with? I had mine dilated twice with a laser by my ENT but this was before I was diagnosed with Wegener's so I'm not sure if treatment would have been different for me had they known. My ENT didn't seem to think these surgeries were an ideal scenario but rather a necessary evil. It sounds like getting a few other opinions is the right move.
    Last edited by jlove; 02-04-2016 at 03:57 AM.
    Diagnosed October 2012

  2. #82
    Join Date
    Nov 2010
    Location
    ~46N1165W
    Posts
    1,938
    Post Thanks / Like
    Mentioned
    25 Post(s)
    Tagged
    0 Thread(s)

    Default

    an estimate about what percentage of your normal airway
    The ENT didn't give an estimate, but from what I saw I think it would be mild at this point. Maybe 10 or 15 percent.

    The stenosis isn't the only problem, tho. The pulmonologist prior to the ENT (prior to knowing I had stenosis) said my shortness of breath was a "condition of a 1,000 cuts" -- the old chinese saying (actually, a form of torture) where a lot of small things, unimportant singularly, add up to be a big deal when taken together. However, I think the stenosis is the largest contributor to the problem.

  3. #83
    Join Date
    Sep 2010
    Posts
    102
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    My ENT has done the SGS procedure on me 3 times - in the hospital as an out-patient. I went from not being able to breath normal to no problems. Since I have been on Rituxan I have not any problems at all. Still see my ENT every 3 months and he checks me but I could not be happier. I am able to work out - not running, but walking and bikes. I would not hesitate a minute to doing it again. I am on Nexium 1 pill a day just to protect my throat. The ENT that diagnosed me said he had never done the surgery so he turned me over to another guy. He told me it was important to have someone that had done it before.

  4. #84
    Join Date
    Oct 2011
    Posts
    107
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    vdub,sorry to hear you have another problem.It sounds like the doc caught it early.Which is the only good news.I have seen at least 10 ENT docs between the major teaching hospital I go to,and the Mayo clinic.My SGS was caused by GPA.None of the ENT docs are gung ho about treatment,and would never do surgery in their office.There is no magic pill.Only surgery.The less they do the better.I have a Trach tube so dilation does not need to be done as often.Goods luck.
    "You can tame anything,except the human tongue"

  5. #85
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Dear vdub. I am sorry for that new "gift".
    Our Gwen knows a lot about this issue. I am not sure how much she comes here so if you want me to connect you with her please let me know. I will send her a msg on facebook. She also created page about it on facebook, I think not only. Try this link:

    Airway Stenosis Patients Association | The Airway Stenosis Patients Association is a support network for anyone affected by airway/tracheal stenosis.

    Keeping you in my prayers. Please update us.

    P.s. I still have your email and skype. We were supposed to skype with my beautiful Phil at the day that he passed...
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  6. #86
    Join Date
    Nov 2010
    Location
    ~46N1165W
    Posts
    1,938
    Post Thanks / Like
    Mentioned
    25 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks, so much gals! Having input from people who have actually been trough the process is really important.

    Alysia, I do remember we were supposed to skype on that sad day. I will always feel bad that I missed talking to Phil by just minutes. I think of him often.

  7. #87
    Join Date
    Nov 2010
    Location
    ~46N1165W
    Posts
    1,938
    Post Thanks / Like
    Mentioned
    25 Post(s)
    Tagged
    0 Thread(s)

    Default

    I dropped by the ENT and picked up a video of my subglottic stenosis. Below is a picture of it. I guessed it was maybe 15%, but as I look at it, it might be a bit more. I know its getting harder to breathe.

    Subglottic Stenosis picture (click)

  8. #88
    Join Date
    Jul 2014
    Posts
    294
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Recent study re SGS attached

    For Vdub and anyone else interested in this subject, this is a recent study that somebody sent to me. I have not had to deal with this problem, but I keep a file of any info I come across on the various manifestations of our odd disease. Tracheobronchial_Stenoses_in_Granulomatosis.pdf

  9. #89
    Join Date
    Jul 2014
    Posts
    294
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Study attached... trying again....

    Tracheobronchial_Stenoses_in_Granulomatosis

    Tracheobronchial_Stenoses_in_Granulomatosis.pdf

  10. #90
    Join Date
    Jul 2010
    Location
    see map location in MN
    Posts
    4,374
    Post Thanks / Like
    Mentioned
    16 Post(s)
    Tagged
    0 Thread(s)

    Default

    Would stretching be considered surgery since I know that is often done? I have had that done a couple times but that procedure often doesn't last too long but helps a lot for awhile anyway.
    Knowledge is power! Wisdom is using it to make good decisions!

Page 9 of 11 FirstFirst ... 7891011 LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •