Originally Posted in Newbies...

[annekat]

Wow, same situation here, with the voice being affected (the inflammation so close to the voice box.) That's actually the reason they can't do re-sectioning - because it's too close to the cords. Now that I think about it, I wouldn't do it anyway, because 1) if they don't know what caused it, how the hell can they guarantee it won't come back AFTER and then what? 2) I worked almost two decades on this voice. To lose it would be devastating 3) the complications that arise from that procedure are so life-altering - don't think I can ever be mentally prepared well enough for that...

I've been singing since I was 17. That's half my life...of singing. What I noticed was that my high notes are gone now. I can't seem to breathe fast enough or push hard enough to get higher notes. Used to high E, F, and G. Sing classical stuff like Mozart... now I'm singing pop, and gasping. It was always a dream to sing and I can't live without it. So I'm still hoping there will be times after dilatation I can do this like I used to a few years ago. Thanks for the message - I appreciate it.

I'd forgotten about your singing. What a shame that this should strike you right in that area. Though I'm not a singer to anywhere near that extent, and I haven't had any TS that I know of, I can report that earlier in my WG, my voice was much worse and I could not sing a note, and now I can. I'm hopeful they can alleviate those problems for you so that you can sing the way you want to again.

[renidrag]

I also lost my singing voice but lately has been slowly returning. Breathing remains an issue.
Dale

[BrilliantLight]

Hello all,

Short update to follow. Vacation seems to have helped immensely - went into the ocean every day and it seems to have helped with allergy like symptoms. They went away completely.

Back from vacation - it's been a dreadful time back to colder weather from plus 30 degrees. The frigid air on the plane didn't help things. The entire family came down with something that feels like bronchitis. Symptoms have eased up a lot since last Tuesday...state of Stenosis seems to have stagnated - it's been the same since I left. Not sure whether I'm imagining it but the prednisone didn't do much. I didn't have to go back on them while on vacation, thank goodness.

Still coughing from the bronchitis...bit of a head cold going on now. Breathing is difficult, but mostly just loud. Waiting for a CT appointment for sinuses and lungs. Already have my follow-up booked with the rheumy for the results (for tests I haven't taken yet) on the 28th. That's all I've got for now. Oh yeah, it snowed again here today. *Sigh*

Hope everyone is doing well...hugs to all.

[BrilliantLight]

Hello all,

Hope everyone is doing well as can be.

Well, I'm just writing to provide an update since last post...should anyone be interested. :P

I had my follow-up with the rheumy. Was able to get extensive blood work and new CT scan for lungs and sinuses without the effects of Prednisone. Was told that prednisone in my system might skew results as it suppresses inflammation symptoms. So now, prednisone has been out of my system since mid-March and breathing hasn't worsened (it's actually gotten better since). Here's what I found out:

1. Blood results came back normal across the board. For all ranges, I'm smack dab in the middle. With the exception of ESR which is still within normal parameters. Kidneys are working as they should.

2. CT Scan revealed nothing in lungs or sinuses. No sign of GPA. All organ function is normal (kidneys are good, liver is good, lungs are clear, sinuses have mucous but are clear...no evidence of GPA anywhere)

3. My ESR was 25 in February. Most recent blood work revealed ESR to be at 9. There was some sort of infection/inflammation (which I believe was eliminated by the antibiotics i had between then and now).

4. My breathing has improved, but allergies are horrendous (I'm going to blame spring for now, and see what happens once stuff stops blooming. It's so depressing, considering I used to LOVE this season. Loved lilacs and buds...)

5. When I got back from Cuba, I got sick. Like bronchitis sick. The airplane was like a freezer and the vents were blowing something in my face all the way home. Was afraid the stenosis would worsen so I got antibiotics. The stenosis actually improved; I mean, the narrowing is not that narrow now. And day to day, it seems to be improving, if possible. (?? Is it?)

The next step is getting another dilatation but this time with cortisone. I may or may not have scar tissue down there...so we'll see. This will be the 2nd dilatation. I have yet to schedule an appointment with my ENT.

With this being said, I have not been diagnosed with GPA. Due to lack of symptoms and evidence, it could not be confirmed. The rheumy says that aside from the stenosis, I'm healthy as ever. I don't know what to make of this. On one hand, I'm elated. But on the other, I know it doesn't mean I DON'T have it.

I guess I'll wait for a few more days to see if the narrowing becomes less of a narrowing...I may need to have scar tissue cut...but I'm still hoping that the stenosis is just going away VERY SLOWLY. This is what if feels like. Or I'm just trying to convince my sense of the impossible. Not sure whether it's possible.

I dearly hope everyone is well. And I think I am blessed to have the health I do have...I wake up every morning, feeling lucky...and fortunate to have this blog as a support. I am grateful for this site.

BrilliantLight

[annekat]

Thanks for the update, and I'm so glad to hear you are doing so well and have no signs of WG in any of your tests. Do keep us posted on how the dilation goes. I hope that everything positive you are imagining, the narrowing becoming less pronounced, and all that, is absolutely true!
So sorry about the allergy stuff, though. Maybe you can get that dealt with as a separate issue, like with shots, perhaps, once you are more sure what is going on. I got allergy shots for a year or more before my WG dx, and I thought they were helping. I discontinued them once i knew I had WG... not sure I had to, but the doc thought I should, and it just made things less complicated.

[vdub]

Cuba! You Canadians get to do some cool stuff.... Maybe I'll be able to go to Cuba soon now that talks are underway. I see where a ferry line just opened for business between Florida and Cuba. I would love to go there and see the sunny beaches.

I'm glad they are now thinking you don't have gpa. That is a real blessing. Good for you!

[BrilliantLight]

Nothing new to report...I have a follow-up scheduled with my ENT after rheumy couldn't confirm Wegener's. I want to schedule my 2nd dilation as this time my ESR is down. I'm optimistic that this might mean no recurrence of the stenosis. The first and only time it came back, I had an ESR of 25.

I tried to get a copy of the biopsy results but my ENT's office says they don't have it.

Is it possible that all they checked was for evidence of vasculitis and cancer? I find that so difficult to believe. Why wouldn't a doctor do a test for a wide range of possibilities? It certainly hints at arrogance that's detrimental to patients. Based on a single symptom, they've ruled out everything else...?

On top of which, I find it ludicrous that they test for vasculitis in an area that's never yielded positive test results in any known case...but they keep checking anyway from case to case. OH, and get this: I'm also told that if someone tests positive for P-ANCA and/or C-ANCA, that STILL doesn't mean/prove they have Wegener's. WHAT??? That's what a Fellow at the rheumy's office told me.

Something interesting: I've forwarded my files overseas for a second opinion. All they require is the biopsy details...it is frustrating that this is so difficult to obtain. Over there, based on all the notes in my files, they have tentatively assessed that it doesn't look like Wegener's. VERY strange. I feel cheated. And I officially don't trust any doctors here.

Cue self-pity: It would be so nice to be able to run or jog (play!) with my 10 year old daughter. Or walk up a f-ing single flight of stairs without seeing stars due to shortness of breath. I feel like I'm 80 if I even try to quicken my pace. So very angry at my body. Still haven't stopped asking, "why?"

[kaysee]

Glad to hear they don't think you have WG, but I sure hope they can figure out what is going on. It sounds like there is definately a problem going on. I wish you the best. Keep after the doctors to figure it out. Have they checked your heart? When I was so very short of breath it turned out I had something called tachycardia. My tachycardia was probably caused by the WG. Once I was given meds to make the heart beat regular I no longer had shortness of breath.

[BrilliantLight]

Thanks Karen,

It turns out that I've been diagnosed with ITS (Idiopathic Tracheal Stenosis), not Wegener's.

Going in for my second dilatation within the next two weeks - inflammation seems to have gone down. But ENT has indicated that I have a "shelf-like" band scarring below the chords, and limited options leave me with nothing but the re-sectioning surgery....if ever I want to breathe well again. Singing the way I used to sing is probably off the table, but at least I'll be able to function after.

Thank you everyone for your support.

[annekat]

I'm sorry to hear about this diagnosis and the severity of your breathing issues, requiring surgery to correct. Breathing issues are one of the worst and scariest things, and I know because of having asthma off and on throughout my life and having it basically ignored when I was younger. However, this thing you have is much worse. There is a Facebook group for Idiopathic Tracheal Stenosis, if you are on Facebook... I joined at one point for some silly reason, I guess because I wanted to see what TS is all about, having heard that it could happen with WG (and possibly not knowing at the time what 'idiopathic' meant). I'm not sure if I'm still a member or if they are very active, but you might check it out. The WG and vasculitis groups on Facebook are pretty good. Anyway, good luck, and I hope you are able to get that surgery and it isn't too bad to go through. Let us know.