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Trachea closing & newly diagnosed need urgent help

Posted , 6 users are following.

stephanie3284
stephanie3284

I'm 32 and was diagnosed last week. I was in hospital 2 weeks ago being put under to have a bronchoscopy but they couldn't intubate me so the procedure was abandoned and I saw and 2 ENT's who suspected WG. At an ENT clinic last week It was confirmed.                                                                                        As I have Rheumatoid arthritis they has mistakenly thought this was the issue with me lung. Now it turns out its WG and the reason they couldn't intubate me was my windpipe just below my vocal cords is only open 30%. The ENT siad last week that dillation couldn't be used as this would speed up the disease and if it gets to the point where I can't breath  I'll have tp have a permanent tracheotomy. I'm based in Ireland. I think I might need a second opinion. Has anyone ecer heard that dillation would speed it up? I'Or has anyone any advice? Lastly, how quickly were people starting with treatment  after diagnoses?

0 likes, 5 replies

5 Replies

  • Angelfire
    Angelfire stephanie3284

    Posted

    Hi Stephanie I'm Ian from Scotland had WG for 22 yrs now, developed Trachea Stenosis 2009 and had 9 ops so far to open windpipe, usually dilation which lasts from 8 days to 5 weeks, honestly speaking you'll have this till your life ends but it's liveable just a pain in the backside for the ops, don't fret it won't kill you I know coz I'm still here, take care Steph xx

  • Angelfire
    Angelfire stephanie3284

    Posted

    Sorry to hear about your WG diagnosis Stephanie, I took WG at same age I'm 53 now and my trachea probs started when I was 46 I'm going for my 9th dilation 7th December and I've never heard of dilation speeding up WG but don't fret dilation is simple procedure and you'll be fine but it's only temporary, you don't want tracheostomy ever so keep getting dilation best of luck Stephanie 😀

  • mdm323
    mdm323 stephanie3284

    Posted

    I have also have subglottic stenosis as a result of wg and live in Pennsylvania,usa.  I had an number of dilatations over the years with long acting steroid injections into my trachea by Dr Robert Lebovics, ENT in new york city, who is world renouned for treating wg patients with this. He developed the procedure while he was at the national institue of health.  Very good results. It saved me from having to get a trachea resection.
  • Ann1110
    Ann1110 stephanie3284

    Posted

    Hi I've had 2 dilations and each lasted 2 years after 60% closure on airways. Surgery advised alongside medication to avoid scaring which can be an issue. You need a top specialist in dilations fast.

    Initially I had a rubbish set of medics albeit private dancing around, while I couldn't breathe ffs.

    Guri Sandhu in London sorted me at speed - can't recommend him enough. Top ENT.

  • gifted1
    gifted1 stephanie3284

    Posted

    Hi Stephanie,

    I was just diagnosed with WG yesterday, I have had serious sinus issues going back about two and half years, had a spell with Bell's palsy also and shortness of breath. Just around November I started to get serous muscle pain all over and then started to effect the joints was so bad when I woke up one morning at 2am I called the ambulance I literally could not move. It took me over thirty five minutes to get from my bed to open the door for the paramedics. I guess the reason I am writing this is to say I lost out over 2 years with misdiagnosis of my condition and as it's a rare condition it's not top of the list with doctors. I am also based in Ireland by the way and have just started treatment today for WG so will be interesting to see how it goes. If I were you I would get another opinion as my doctor suspected everything from haemocrmotosis to rumatoid arthritis to gout never accounting the sinus with the condition WG and I had attended the eye and ear hospital on numerous occasions with the sinus issues and nobody spotted it until now.

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