New member from South Dakota

[jtausan]

Hello everyone! Love the site! It's so nice to find people with the same issues. I was diagnosed with WG in 2009, but had symptoms for years. My main symptom is Subglottic Stenosis. I guess I shouldn't say main symptom because I have alot of symptoms but the Subglottic Stenosis is the hardest to live with. I have very little airflow, I can't do a lot of the everyday things people take for granted. I have realized by reading posts on this site that I am not getting the healthcare I need. I have gone to Mayo Clinic (this was before I was diagnosed and I didn't get much relief) I have bounced from ENT, to GP to Rhuemy. Obviously in my pretty small town their is not a WG specialist. I have traveled to Rhuemy in Houston, Tx but she also is not a specialist in WG. My ENT here does not want to do anything for the Stenosis because of scar tissue etc. I understand this but would just like to breath. After reading posts I am pretty sure I need to travel elsewhere to have my throat checked with a WG specialist. I take prednisone and methotrexate but these drugs have not helped the inflammation in my throat much. Has anyone taken other meds that have helped the throat? I am looking forward to hearing from you! :biggrin1:

[pberggren1]

I know that JanW on this site has alot of insight into Subglottic Stenosis. What part of the state are you in? I am shocked to hear that you were at Mayo and did not get diagnosed. Do you remember which docs you saw there?

[elephant]

I think the top doctor to see is Dr Lebovics ( for subglottic stenosis) JanW see's him! I think he is in New York.

[Sangye]

Hi, welcome to the group! Yes, JanW is our expert on subglottic and tracheal stenosis. You definitely need to go to a Wegs center like Mayo for a rheumy and many other specialists you might need. You might also want to see Dr Lebovics as he is the the expert in treating SS. Unless you only have SS, I don't think Dr Lebovics can be your main doc.

[jtausan]

Thank you for the info on Jan W. I sent her a note. I live in Rapid City which is in Western SD. When I first went to Mayo I had a positive ANCA but a negative sinus biopsy. I had a lot of infection in my nose, (I have had 4 sinus surgeries) I did see a pulmonlogist (Edell) and he did a Bronchoscopy but he thought at the time that I had severe acid reflux. The WG has also affected my ears, I have a tube in the left side, and I have the usual fatigue and joint aching symptoms. Mostly my hips, I have had cellulitis on my face etc. My urine tests have come back ok for now. After seeing my Dr's they have ruled out the severe Acid Reflux and they treated me for Asthma for years. My Rhuemy gave me the actual WG diagnosis. My ENT recently placed a new tube in my left ear as the previous one came out and he did take another tissue sample of my sinus tissue but it again was negative. He said that sometimes you will never get a positive sample, he said it doesn't change things much since I am being treated for WG and he is convinced I have it also. My left side of my nose is full of granuloma tissue, I also have the saddle nose. My ENT wants to see what the Methotrexate will do to my Stenosis but I have been taking it since march and do not have much change in the throat. I have had a couple of close calls where I could not get any air flowing through, very scary! I don't want to do a trach but some days I just want to breath normally. Sorry pberggren I was long winded there.

[Jack]

Sorry to hear about all the sinus surgery and diagnosis of infection, I've been there myself and only discovered later that it was all a waste of effort. As soon as I received the correct treatment, it cleared up almost completely, but it took quite aggressive treatment to achieve this.

[Jaha]

jtausan,

Glad you found this site. It doesn't hurt to get a second or third opinion. I see doctors at Cleveland Clinic and have read were they are one of top places in the world to treat Wegener's. Every month I see a Rheumy doc and she spends about an hour with me. I don't have the stenosis but I'm sure that you could request a doc there that specializes with that complication. Good luck and God Bless.
Jana

[Brooke]

Well Welcome!!! I too am from South Dakota. I live in Sioux Falls. I was also diagnosed in 2009. I have sinus and upper airway involvement and a little lung involvement. I too was treated for asthma for a while as my sinus biopsies kept coming back negative. They finally sent tissue to Mayo in Rochester, MN and they said it was enough to confirm Wegener's. I also had a saddle nose deformity, ENT fixed it. I too have subglotic stenosis, not too bad though. Sorry for rambling on, excited to see someone from SD!!!
Maybe you should go back to Mayo Clinic? I see Dr. Karina Keogh, she is a pulmonologist there.

[JanW]

Yes, it's true, that I do see Dr. Lebovics and he is the guy that fixed my stenosis. I just saw him a couple of weeks ago and I told him that not a day goes by that I don't think of the surgery and what a change it has made in my life. I could not recommend him more highly, and if there is any way that you could get out here (he's in NYC) for a consultation, I would totally do it because he's the guy to see for both saddle nose reconstruction and stenosis repair (not coincidentally, people who have one often have the other -- he did a presentation of saddle nose repair and the Symposium, and there were a bunch of wheezers in there, and then I went to the stenosis presentation, and there were all the noses -- weird! I have one as well).

Do you know how open your windpipe is at this point? This is actually fairly important to know. I was down to 2.5 mm -- I was very close to a stage they call "incompatible with life" and my next step, if I didn't have my wonderful surgeon, may have been a trach (or sudden death, but I don't dwell on that). And once you get on a trach it can be very hard to come off (for reasons I'm not completely clear about). I too was misdiagnosed with asthma for six years -- that's very common. What led to my diagnosis was other aches and pains, specifically an ankle 'sprain' that wouldn't heal.

I would like to tell you that one medicine or another could slow the advance of your stenosis, but this has never been proven. These cases call for surgical management. And to let anyone do this kind of surgery to you who doesn't do it all the time could potentially be worse than not having it done at all!

I have been very lucky in that I only had to have one repair so far. Many people will have two or more within the first year (I had mine done in March and it has remained fully open). I know that there is an expert at Cleveland Clinic, by the name of Lorenz, but I had read that he as practicing in the Mideast -- I'm unsure whether he is in this country or not.

I'll look for your note to me, but I just wanted to post this publicly in case anyone is reading along and needs this information.