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View Full Version : Prolonged Subglottal Stenosis



capabayan
10-07-2008, 02:45 AM
I just had my 3rd successful bronchoscopy to fix my subglottal stenosis... I have been blessed with an excellent ENT who specializes in treating WG patients with stenosis... but it's getting kind of discouraging. This is the third time I've had surgery (dilation, laser removal of granulomas, steroid injection in the trachea) within the last 7 months. Does it get any better??

I've also done some reading online about the treatment of stenosis. It sounds like, the more they go in and fix it, the more damage is done to soft tissue. That makes sense... but is this permanent damage? Anyone knowledgeable about this??

Btw - for anyone else in the near vicinity, the ENT is Lucinda Halstead at MUSC in Charleston. Definitely a two-thumbs-up recommendation!

Gwenllian
10-10-2008, 04:46 AM
My Tracheal stenosis was TERRIBLE for years and years, but i have to say, after many dilatations and immuno suppression, my breathing is MUCH better.

The stenosis is still there, but I can certainly live with it like this.

I hope it improves for you toox

CarolG
11-26-2008, 07:36 AM
What were your symptoms for the tracheal stenosis? I've been having something a choking sensation but not in my throat; more in the upper chest area. My rheumy just had me do another CT to check it out, awaiting results.

ticklytoes
02-21-2009, 02:06 PM
hey capbayan!
this is ticklytoes and this is very interesting...i also have subglottic stenosis and recently as my rheumy was tapering my prednisone, i had an acute flair up and the opening in my throt had shrank to the size of a straw...5mm is all. Super scary! I am from tennessee, and so i spent a week in vanderbilt hospital as a result of a tracheotomy. the dr here said thats all he would do because with active wegeners the dilation, removal, injection, etc would just cause more damage in the long run...right now my wegeners is considered active...is yours? are you in remission and still having problems with stenosis? i am looking for answers as well. If you are in remisson, what medicine helped you to achieve it? i have had my trach now for 3 weeks and thats 3 weeks too long...be glad you havent had to have a tracheotomy. its horrible. I am 27 years old and have a 1 year old son. its really hard dealing with all this. i dont have time to be sick! i loo forward to hearing from you!

capabayan
02-25-2009, 02:36 AM
Ticklytoes -
No I am not in remission yet, though things have been going well and we have been decreasing my dosages of pred & cytoxan lately. I actually had 4 surgeries on my airway last year, between February & October. The first time, my doctor went in and refused to do anything since it was so small and near my vocal chords. He conferred with some other local ENT's and referred me to Lucinda Halstead at MUSC in Charleston. She took one look and told me I would need a trach because my airway was the size of a 6-month-old (I think that's about like 5 mm)... thankfully they were able to manipulate all the tubes so that was avoided. When I woke up, I was so relieved that I didn't have a trach that I started crying! Anyway, I don't know if there's any way you could work it out to see her, but she is an excellent doctor. She has been specializing in the area of subglottal stenosis since the early 90's, I think, and is an expert at the surgeries. I asked her about long-term damage due to the laser, steroids, etc, but really there is no other option besides a trach, so there's not much that can be done about it, other than praying and hoping for the best.

coffeelover
02-26-2009, 03:41 AM
I too have tracheal stenosis. My first surgery was Oct 20, 2008 and I do have a trach in. After 3 surgeries, I go back to the ENT tomorrow (the 26th of FEb) and am hoping they will have a date that I can get the trach out. Although, I cannot count on it as I was onlyu diagnosed with WG about a month ago.
My breathing is much better and I would love to look somewhat "normal" again.
Lisa Coffeelover

ticklytoes
02-27-2009, 03:47 PM
hello lisa-
i couldnt help but notice that you too have a trach...so could you give me the story behind how it all happened? i saw where you said you had 3 surgeries...what type surgeries are you talking about? i would love to hear more about it. Are you on any meds? are you in remission? I too have a trach. I went to the ent yesterday and he told me he wouldnt perform any dilations until o was completely off my meds...i think i may have to look for a second opinion, bc at this point, i dont think that i will ever be completely off meds, and if so, not soon enough to suit me in order to get the trach out...please let me know any info...thanks and i look forward to hearing from you. btw, what did the dr say today? nicole

coffeelover
03-21-2009, 02:35 AM
ticklytoes,
I am sorry I did not respond sooner, I did not check this thread after posting on it...so I hope you get this.
My first surgery was to put the trach in and open up my airway.
The other two and I will have another one in June, are to scrape the scar tissue and take pictures to monitor the progress or lack there of.
So far the tracheal stenosis surgeries seem to be successful and I am hopeful that I may get my trach out after 7 months sometimes in June. But with WG...you never know what is going to happen.

I was diagnosed with WG two months after my trach surgery. My own fault for not consulting with my rhuemy when I was having breathing trouble. I assumed (wrongly) that I was having allergy and asthma type problems as they both run in my family. I assumed (wrongly again) that these symptoms would eventually go away with allergy and asthma prescription meds and with the change of the seaons. (we have lots of seasons here in MN that affect us allergy sufferers)
So I did not go to see my rheumy until two months after surgery, but as soon as she finished repromanding(sp?) me, she got right on the WG board and immediately started testing and giving me the meds needed to hopefully slow the progression of WG and gave me some hope on getting this in remission within a year?
So now I wear a trach, I hate it! But I have had it now for 5 months and it really does not bother me as much as it used to. Let's just say I am used to it and am working on that "new normal" attitude. If I could choose between the trach and prednisone, I would gladly keep the trach and get off the pred, but that is not a choice I have at this time either.
I am now having fun "blinging" up my trach. My husband has been sewing me new neckbands and a friend is creating some jewelry. I have bought pieces of jewelry that I attach to match my various outfits and this just makes my creative juices flow and makes wearing this thing much more tolerable.
Why do you have a trach. Stenosis, I am guessing. Is it because of WG?

I hope this has helped you some. We should stay in touch as we are sisters in trach hood!
Lisa Coffeelover

coffeelover
03-25-2009, 02:46 PM
we are sisters in trach hood!
Lisa Coffeelover[/quote]

ticklytoes
07-02-2009, 03:05 AM
Lisa,
i am so glad to hear that you are getting your trach out! YAY! I wish i could say the same...my dr at vanderbily said he wouldnt do anything to my throat until i was tapered down to 2mg of prednisone...im on 9mg now. wow...it must be a great feeling knowing youre gonna be free soon. right now they are working on getting me fitted for a stoma stent, a more low profile, clean and collarless trach. i would love for them to tell me i can get this thing out! As of last week, my bloodwork came back as CANCA negative, ANCA negative, and PR3 negative....officially in remission! Whoo hoo! Trach removal is somewhere in my future...i just know it! let me know how things go...love and prayers, nicole

coffeelover
07-04-2009, 04:52 AM
Nicole,
thank you so much for your well wishes. I hope you can get your trach out soon! The trach itself really did not bother me, it was just the extra effort (I am lazy) it took to keep it cleaned and the effort I took in blinging it up, then there is the effort to explain myself to people when they stared.:p
I was never informed of the stoma stent or collarless trach, that is something I would have jumped into had I been given the opportunity.
I suppose, since mine was always meant to be temporary, they figured why tell me?
I would love to say my pred use is done, but I am taking more pred than you are. Just changed from 15mg to 12 1/2 2 days ago. In two weeks I am going to 10mg and then my rhuemy told me I would stay there for a while. Honestly, If I had the choice I would keep the trach over the pred!
But, that being said, I am thrilled to have my trach out and still haven't shut up! It is not that I couldn't talk with the trach, it is that I love talking without it! Or singing or shouting.
I hope you continue to get along with your trach. If you want some blinging ideas, I would be glad to share. I sincerely hope you get to get yours out soon.
I am very close to remission myself....so feeling great and knowing I am through with the ENT now helps my disposition. (I hate doctors and doctor visits.....especially waiting in the waiting room)
Keep chatting with me if you want......I know what you are experiencing.
LIsa Coffeelover

jola57
07-09-2009, 10:31 AM
Nicole, I'm glad about your CANCA, i can't seem to shake mine. I would hope that your trach days ar numbered.
Lisa, Row row your boat (its the only song that comes to my mind :)) lovely to hear you sing

coffeelover
07-11-2009, 03:23 AM
How about singing "It's a beautiful day " by Sting or What a wonderful World by Louie Armstrong?
Lisa

jola57
07-11-2009, 09:09 AM
I can hear you sing even with my wonky ears LOL

coffeelover
07-13-2009, 11:03 AM
Joanta,
I am presently in Colorado visiting and traveling. Thanks for inspiring me to travel. I felt so trapped by WG in so many ways and not traveling was driving me crazy. I am so glad you continued to encourage by example.
Lisa

jola57
07-13-2009, 03:19 PM
I am glad to have helped, I remember how hard it was those two years without traveling for me. Enjoy:D

pberggren1
07-14-2009, 05:53 AM
I'm happy for you Lisa. I'm glad you are able to travel. Did you drive out there? I love to travel myself, but I find it very tiring now that I have WG.

Sangye
07-14-2009, 08:13 AM
Colorado, ahhhhhh. Let your eyes soak up some gorgeous mountains, the endless trees, the big sky of the West... and then ship me some of it, would ya? So glad you're on the road again. Changing the scenery goes a long way towards feeling better. :)

coffeelover
07-18-2009, 04:59 AM
It will take me three or more days to recover from my "pred" trip, but it was worth it! Oh the mountains were beautiful, the roads were smooth and the friends I met up with including my fellow Weggie was enlightening.

Yes, Phil, I am tired and darn near depressed today (back at work) but this too shall pass.

LIsa

Doug
07-19-2009, 01:10 AM
It will take me three or more days to recover from my "pred" trip, but it was worth it! Oh the mountains were beautiful, the roads were smooth and the friends I met up with including my fellow Weggie was enlightening.

Yes, Phil, I am tired and darn near depressed today (back at work) but this too shall pass.

LIsa

Lisa- Perhaps posting vacation photos in your WG Disease Support Forum album can take your mind off work. It's easy, though it took me some time to discover, then post my own silliness in it. Of course, this suggestion might seem insincere considering I'm drinking coffee from my "I don't care! I am retired!" mug, enjoying the morning air on my bare feet, and catching up on my postings! To use that abomination, lol!:):):):)

coffeelover
07-19-2009, 06:00 AM
Doug,

I will post pics if you give me the instructions. I hate to take the time to figure it out myself as I already spend too much time at work playing on this site.

Doug
07-19-2009, 07:23 AM
Lisa (and anyone else who wants to post photos in an album)-

You can post up to 60 photos in an album of your photos or pictures you like by:

1. clicking on either UserCP or Quick Links above

2. click on Pictures & Albums in Networking menu (the last option)

3. click on Add Album

4. fill in the Title and Description boxes, then hit the Submit box

5. hit Click Here To Upload Pictures below the box that comes up after you complete step 4

6. hit Browse box; your computer files will come up

7. locate a photo you want to upload, left-click on it to select it

8. hit Open, which uploads the file; you can upload three at a time as there are three Browse boxes (step 6, above)

While it looks complex, it is fairly straight forward once you've done it. You'll be given the option of making it a public or private album. Anyone who wants to look at it (including you!) needs to:

1. hit Members above

2. use the Locate Member quick search feature by typing in the name the member uses on the forum (for example, I use doug)

3. double-left click on the member's name

4. go to the right side of the member's personal information page, to Mini Statistics, then scroll down till you find Albums

5. double-left click on the album name to open up the album

I'm not aware of any specific way members will know if a member has an album short of the member noting it in a posting, then intyerested members following the five steps immediately above.

Whew! You asked for it. Toyota. Select this posting and click on Copy, Paste this on a MicroSoft Windows Word page, the print it for easier reference when you try this out. I, incidentally, have an album set up, with weird pictures that include many you've seen so far as avatars on my postings.

Jack
07-19-2009, 07:32 AM
I've just checked out your album Doug. I find it disturbing!:eek:

Doug
07-19-2009, 07:44 AM
I've just checked out your album Doug. I find it disturbing!:eek:


Jack-

Many people will....! :D

Doug
07-19-2009, 07:53 AM
p.s. When you double-left click on any album photo, it enlarges magically, and a caption appears below it (if the posting member captioned the photo). Oftentimes, the caption explains just enough more about its selection to allay any anxiety other members might have looking at it. Sometimes...! :o

Jack
07-19-2009, 03:29 PM
click on any album photo, it enlarges magically
Ah! So is that is what is in the box under my desk - magic? I always wondered how computers work. :rolleyes:

Doug
07-20-2009, 03:59 AM
Only if you believe in Peter-Pan-nery! For most, the enlargement relates to some programming code that responds to specific mouse commands. The machine is the servant of the human master. Ha!:)

ticklytoes
12-29-2009, 05:19 PM
Lisa...
Its Nicole (ticklytoes)...did you get your trach out? Still have mine...go back for check up at the end of january...almost exactly a year from when i had it put in :( looking forward to hearing from you~!

coffeelover
12-30-2009, 09:52 AM
Lisa...
Its Nicole (ticklytoes)...did you get your trach out? Still have mine...go back for check up at the end of january...almost exactly a year from when i had it put in :( looking forward to hearing from you~!


nichole,
I hope you get good news at your visit. I got my trach out last June, just in time for my daughters graduation. It was sweet!
I was at the point thought that I did not really mind the trach at all and if I was told I would have to live with it forever, I would have accepted it without too much difficulty. My husband was so sweet he used to make me necklaces to cover the trach area. He would sit at night and sew me a necklace to match a particular outfits and colors that I wear. No wonder I married him!
I do not think I have any further complications with my trach, but I still suffer from some inflamation issues in my nasal area and will be going back to Rochester Mayo to see my ENT there regarding this. I was there in December, but he needed to treat me for Thrush first (thrush is something I have suffered with since my trach surgery over a year ago) so I will be going back in February. I have chosen to not have the cosmetic surgery done to cover where the trach was so that is serves as a reminder to me to take care of myself. I may someday choose to cover that scar, but my doctors have agreed with my choice and even comment that it will heal better on its own. Now that the trach is out...I certainly do not want it put back in. But I know it was a life saver for me and there for my life saving back up, so I cannot get too worked up about it.
Is your trach in as a necessity or as a back up "just in case" like mine was? If it was just a back up, I hope you can get it out sooner than later. I will personally celebrate with you. If yours was as a necessity, ask your ENT when you can move towards its finality. What can they do to make you less dependant on it? What methods can you do to expediate the process?
I am still on prednisone (10 mg) to help with possible inflamation. Are you on prednisone and if so how much? I actually am more sick of my pred face than I ever was of the trach.
Ilook forward to a reply from you and wish you the best
Lisa Coffeelover

ticklytoes
12-30-2009, 06:33 PM
hi lisa...i am on mtx and 8mg of pred at the moment.trying to taper, but i think im at the stopping point bc my pr3 is borderline again. My ENT wants me to be as low on the pred as i can go, so we'll see what he says when i go back at the end of jan. my trach was a neccessity...my trachea measured only 5mm when they put it in, the size of a straw. its a little better now though. i am thinking about askin my rheumy to try rituxan though, bc like you, im tired of the pred. i cant wait to just talk again too! so happy for you! nicole

Doug
12-31-2009, 06:50 AM
Aww! Lisa, I liked both you and Dennis the moment I met you, but it was clear he was special as a person and as a person in your life: His concern for you was inspiring! Now I learn about the necklaces. You lucked out in life's lottery there! Tell him "hi!"