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Thread: Tracheal stenosis and remission

  1. #81
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    Thanks so much for your response. My ENT was a little concerned whereas my immunologist wasn't overly. The ENT estimated about 40-50% but I don't have any shortness of breath at rest or anything...only with physical exercise (high amount). Should I be concerned?

  2. #82
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    I have gotten dilation under pretty much the same circumstance as you because I wanted to be able to breath during heavier exercise. I think the immunologist is looking at it through the lens of his specialty and so is the ENT. So, they have a little difference of opinion. When I have airway issues my Rhuemy , who manages my WG treatments, has me make decisions with my ENT.

    I think ultimately it will be up to you as to whether you want to get the procedure to improve your breathing and then talk to your ENT about it. I would make sure that the person doing the dilation has experience with doing it on WG patients. It is a very delicate part of the body and requires great experience and skill to not do further damage. My guy in Seattle has proven to be very good at it. I found him by contacting an ENT off of the Vasculitis Foundation list and asking for a reference to someone in my area.

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    Yeah...I see my ENT guy in a months time again so will probably wait until then and see what he says regarding if it has stayed the same, got better or worsened. Do you have to undergo a general anasthetic and are you in intensive care or is it day surgery?

  4. #84
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    Also do you know if colds or post nasal drip makes the stenosis worse? That is if I improve the post nasal drip would that assist with the stenosis?

  5. #85
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    It is general anasthesia but it doesn't take very long. I'm awake , walking and talking in very little time. Because of the anasthesia I am not allowed to drive home but really I feel pretty good. It feels especially good to be able to breath so good.
    It is day surgery. They like you to spend the night with someone who could help you in case of swelling or another reaction of some sort but actually I have gone home some times by myself.

    You will be injected with steroids in the throat and possibly Mitomycin C will be applied to slow the healing. I have no fear of this procedure. I'd rather have that done than get ingrown toenails worked on.

  6. #86
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    Colds and post nasal drip can make your breathing feel worse but they don't actually make the stenosis worse. Colds don't cause stenosis. When the cold is gone you should return to the breathing you had before.

  7. #87
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    I've been struggling with tracheal stenosis quite a lot too and have had 4 dilations in total. Usually it happens after I've been in remission for around 6 months, because my trachea gets inflamed during flares and then it takes a few months for it to heal and grow scar tissue.

    The dilation procedure is not scary at all. You get general anesthetia, and you can often leave the hospital the same day. I agree with me2 that you should make sure to find a surgeon that has experience doing the procedure on WG patients. I'm not sure how it is with non-WG patients, but there is a tendency with WG that the stenosis gradually comes back after surgery, as the trachea heals. Though that doesn't happen for everyone. The first time I had tracheal stenosis I needed two surgeries, with 3 months in between. Then after around 3 years it reappeared, and I needed another two surgeries. No problems since that now.

    As me2 said, as far as I know prednisone would have no effect on the stenosis, as there is no inflammation anymore, only growing scar tissue. The progressing stenosis might stop on its own, but I don't think it will be able to heal on its own.

  8. #88
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    This is all so interesting to me, as my tracheal stenosis experience has been so different. It first started 6 years ago but went on for months before they found it. I had 1 surgery in 2011 and there was so much scar tissue they could not dialate it, but just removed scar tissue. He was able to get me from 60% closed to 40%. I have had a "flare" (according to my dr) every year. It presents itself by me getting very short of breath. When my ent scopes me, it is very red and inflammed. I have always been treated with prednisone at this point. And after im off the pred it does behave...for several months and then we repeat the process. This has been atleast 6 times in 6 years. I havnt had any other disease symptoms in this time frame either...so i am very confused by all this" stenosis activity doesnt mean wegeners is flaring" and expecially the one"prednisone doesnt take care of it" then why in the world have i been doing this for the last 6 years? Do any of you with stenosis have answers to these questions? Oh and my ENT says at this point it looks very much like it did since after it healed from my first and only surgery in 2011.
    Last edited by im so blessed; 08-19-2016 at 02:22 AM.

  9. #89
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    I was diagnosed with WGs in approx 2009. I originally had sinus issues and hearing loss. About one year and 9 months or so ago, I developed hoarseness and some difficulty breathing. I was diagnosed with about 30% tracheal stenosis at that time and underwent Rituximab, 4 infusions, one week apart. This was effective and I seemed to be doing fine with no problems breathing etc. or hoarseness until about 6 or 7 months later, the hoarseness returned. (But no breathing problems) I let the hoarseness go, because I thought it might be something else since I was having no breathing issues. (Like an infection of some sort) So I had several rounds of antibiotics with some success off and on. But it kept returning. Also, I had moved and so did not have easy access to a rheumatologist at the time. The hoarseness and breathing issues returned. I was able to see another rheumatologist and ENT. I had Rituxan in June (3rd induction round) Seemed to be fine for a while. Once again, the hoarseness and breathing issues returned and I got to a point where I was coughing up crusts/thick mucous and this caused a few scary situations where I could almost not breathe at all. I was told I had a 40% subglottic stenosis, acid reflux, and some type of vocal cord dysfunction due to this combination of problems. I opted to have balloon dilation and cryotherapy. This was performed two weeks ago. Told it went well. I was sent home, 2.5 hours from Ft. Collins, CO where the surgery was performed. I was doing well, until the 2nd post op night. I awoke, could not breathe, coughed, and this only made the situation significantly worse. Went to the ER where I was intubated and spent 3 days in ICU back in Ft Collins on a ventilator until they could take me back to surgery to see what was going on. They said I prob had some swelling and some sloughing off that got in the way of the vocal cords and/or caused an obstruction. I was sent home after they successfully removed breathing tube with no issues. I seem to be breathing well now. (They dilated the stenosis from 6mm- 14mm with the balloon) I'm just wondering if I should seek someone else to do any future surgeries? My ENT here told me he has seen lots of Wegeners and has performed the dilation on Wegs patients. But how much experience is enough? In addition, he let me go home and said he has not had any other patients suffer this complication in the post op period. I would think this would be an obvious concern for airway obstruction. Should I return to Cleveland clinic for further surgeries/consults on the subglottic issue? And, has anyone had experience with the balloon dilation in combination with cryotherapy? I am now worried about all this causing worsening scarring in the future since people have mentioned on threads the importance of having an expert perform these types of surgeries on the trachea. Also, will my voice ever return to normal? I see a speech therapist on Monday. Hoping this will help the vocal cord problem. I'm also currently on an antacid. Thanks for any input on this subject.

  10. #90
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    I had surgery for tracheal stenosis about two months ago. My first trach surgery. I was 60-70% closed. It has improved my breathing greatly. The bad new is that my doc said it does come back and that people return about once per year for retreatment. Some lucky ones don't need to return so often. The fact that I have been under treatment for the last year did not seem to prevent development of tracheal stenosis.

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