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Thread: Bronchial Stenosis

  1. #31
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    Quote Originally Posted by Donna88 View Post
    My Doc wants to put a stent in to keep my Bronc Stenosis open...every Doctor has told me not to do this. Has anyone got this done, mine would be in the left bronchia over the heart area.
    If you do plan on getting the stent, make sure it is a removable stent.
    Here is a video showing how it works.
    https://www.youtube.com/watch?v=l7LPEqr2qaw
    Last edited by mrtmeo; 11-07-2014 at 06:48 AM.

  2. #32
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    Thanks for that info, it looks easy, peasy. I just worry about coughing it up or punching thru to the aorta, I guess i'm just going to have to put my faith in the Doctor

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    Hey everyone, I'm new to the forum! I am so glad that I have found it!!

    I have tracheal stenosis. I started in with it just a 1 1/2 years ago. But I was diagnosed with WG in 2008. I have been having surgery on my throat every 3 months for the last year and half. They were hoping to put a stent in but because of where my is closing off they cannot. And one of the reasons that surgery is done so much is because of scar tissue. The ENT said that the throat creates a lot of scare tissue, so even when the WG is in remission I will still have to have surgery done.

    Now, when I first started having problems, I didn't know what was going on. By the time, I got it checked out my air way only a size of a straw! It was horrible. I have been in 5 comas just this year. A lot of it was because my throat was closing up and I would put it off thinking it was just a lot of mucus. Well, my case is actually a little bit of both. I have learned that if I cannot clear my throat very well or easily that it is start to close off again.

    When they do my surgery, they do the balloon dilation and then use the laser to cut out the tissue. Then they inject the steroid. There have been several times when the doctors have thought I would need a tracheotomy but so far I have been able to come out of surgery ok.


    Miracles do happen!!

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    Welcome, Miracles! I don't have tracheal or bronchial stenosis, so far, and am sorry you do. But I'm glad if you have to have WG and all its problems, you have found the forum. It's been a godsend for me in the 3.5 years I've had WG. I hope we'll hear more about your WG history, treatment, where you are from, etc. You might put a post in the New Member Introductions section and more might see it. Or maybe you already did, I should check! We are also here for the purpose of ranting and blowing off steam. I'm sorry you have to have surgery so often. You have a good attitude about it. I wish it could change to where you wouldn't need it as much. Well, keep us posted on how things are going.
    Anne, dx'ed April 2011

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    Donna,

    Is your doctor a vasculitis specialist? Because every specialist I've talked with has said that stents are absolutely a HORRIBLE idea with Wegeners. Velma just recently went through some serious procedures to get one removed after the scarring it caused nearly closed off the airway.
    ~ Bob

  6. #36
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    Quote Originally Posted by Donna88 View Post
    My Doc wants to put a stent in to keep my Bronc Stenosis open...every Doctor has told me not to do this. Has anyone got this done, mine would be in the left bronchia over the heart area.
    From what I have read the stents are trouble. They break down and get imbedded in the lining of the tissue and to remove them can be a mess. I would look into other options. I'm looking into laser and dilation with steroid injection myself. I have surgery scheduled for dec 2. I've email my surgeon a few more questions but I think that it's a better solution for me than stents. I know there is a video that dr Langford talks extensively about stenosis but I don't know how to copy it here. If you go to the stenosis feed look under my recent posts another member posted it on my post. I'll try to see which one it was and repost here


    P.O.W.E.R. Positive ongoing waves encourage remission

  7. #37
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    Here is the video: https://www.youtube.com/watch?v=BifdvorrUJ8


    P.O.W.E.R. Positive ongoing waves encourage remission

  8. #38
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    Donna. I think you may need to go to the Mayo clinic. Just what I have read here on this forum. They seem to be the best. I have subglittic stenosis and as far as I know (CT on 26th) I don't have bronchial stenosis. That I would believe is a more difficult area to treat. I would seek out the vey best of the best in bronchial stenosis treatment and go there. Don't worry about the cost it will work itself out. But what Psyborg said is what I know about it as well. Just make sure you know your options before the procedure. ALL THE BEST!!


    P.O.W.E.R. Positive ongoing waves encourage remission

  9. #39
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    Shannon I have been dealing with this since April of 2013. My doctors sent me from WVU to UPMC in Pittsburgh where they placed a stent. BAD IDEA. The stent became embedded and after posting a question on this site I found a wonderful doctor at the Cleveland Clinic who was able to get out the stent and now I am back to square one. My left main airway is still 60-70% closed every 4-6 weeks. Only solution is a bronchoscopy with balloon dilation and cutting away the scar tissue. I have had over 20 of these.

    So I am trying a lung doctor locally who believes I have sleep apnea which makes it worse (was tested and waiting to get those results.) Also advised to switch to gluten free diet to keep immune in check. Nothing helps. It is a rinse and repeat thing for me. I am so aggravated and upset that this keeps happening. My auto immune doc has me doing the Rituxan every 5 months now along with methotrexate and prednisone for my meds. I have battled this disease for 20 years this month. It never ends. But I am hoping with this site someone will read this and know of a solution I can share with my docs. they have no idea it seems.
    Good luck!

  10. #40
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    Hi Velma,

    You may want to go back to Cleveland Clinic to see one of their wegs experts. Some of us on here (including me) see De Alexandra Villa Forte. Some others see Dr Carol Langford. Both are among the best in the world treating Vasculitis.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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