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View Full Version : My First Trach Stenosis SURGERY



GreenTara
08-22-2013, 06:39 AM
HI
i had my first trachael stenosis surgery, two MOndays ago

it went really well. My throat hurts quite a bit, even with oxycodone!
but i can stand the pain, right? I'm a weggie warrior hear me roar!
well, talk at a decent volume, no screaming, yelling for me anymore,
gotta baby this !

the surgeon made scalpel cuts in the scar tissue, did a balloon dilation, then injected steroids to prevent it swelling closed again

the opening in the scar tissue was so small before the surgery, i sounded like Darth Vader, I felt like i was gonna suffocate. It was scary!

I now have a 50% normal opening and feel I can breathe well!

what a relief!

NOW, i'm am ever so curious as to how long this will last!!

Kim

pberggren1
08-22-2013, 09:08 AM
Well Kim, this is is cause for THE GREAT WEGGIE PARTY OF ALL TIME!!!!!!!

Congratulations on being able to breath better. This is such great news. Where are you located that you have such a great ENT that does this for you? And by the way, there are many super heros on here. I am Batman and I would be honored to meet Darth Vader. I love how Vader sounds anyway.

GreenTara
10-08-2013, 04:05 AM
seattle harborview hospital
surgeon is Dr Tanya Meyer

kim
dx 2012

Poppy64
10-08-2013, 11:50 AM
Hi Kim, I had my first bronchoscopy on August 27th. Was scheduled for the next one on October18th but I can tell my breathing is not as good as it was after the surgery but its not quite as bad as it was before the surgery. Also, last week I could not stop coughing and then had an asthma attack. Not looking forward to it but it really does make a difference. The bad thing is I am down to 15 mg of prednisone but had to take 60 mg this morning. I am hoping that I can go back to 15 and not have to start at 60. Btw, I was also called Dr. Vader. Good Luke to you!

annekat
10-08-2013, 12:49 PM
Oh, another Washingtonian! I don't know if I knew that before, or maybe I forgot. But I'm so glad the surgery went well for you and you can breathe well again. I hope you will not need another surgery for a long time, I'd like to say ever, but I don't know if that's how it goes. I have managed to avoid having the stenosis myself, thank goodness. Best of luck to you.

Stacy
11-16-2013, 02:51 PM
That is terrific! Hope you are still doing well.
And Dr. Meyer is my doctor also. :)

LillysMom
01-02-2014, 02:10 PM
My daughter, WG 23 years, had surgery on what they called a 'webbing' in your throat years ago. They 'zapped' it with a laser, and we think that was all. There had been just a small hole in the middle of the webbing for her to breathe through, so your description is similar to hers. However, she has also had a narrowed trachea which keeps her at a higher level of chocking danger. She just handles this by being aware of it. This operation was done in 1993, so it seems to be permanent with her. She still gets hoarse at night from that and/or the narrowed trachea. Hope this lasts for you!

LillysMom

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windchime
01-03-2014, 02:39 AM
Whoo Hoo Kim. Breathing better is such a plus. Hopefully it will last for a long, long time for you. Enjoy your new normal. :hug2:

annekat
01-03-2014, 04:05 AM
Good to know there is a good ENT surgeon for this in the area, in case I ever need it. Although I think my ENT here in Olympia has a good reputation as a surgeon, just don't know about his experience with Wegs patients. I hope things are still going well and that you are breathing easy into the New Year.

LisaT
05-20-2014, 01:03 AM
seattle harborview hospital
surgeon is Dr Tanya Meyer

kim
dx 2012

Hi, Kim, are you able to update us on how you've fared since the surgery? I too have subglottic stenosis and am thus far not very impressed with 'the' ENT I've seen here, who bluntly told me I have Wegeners and subglottic stenosis, gave me no empathy, details, or opportunity to ask questions and bumped me back to my rheumatologist for 'medical treatment', which I now know doesn't usually help the stenosis even if it treats other symptoms. He didn't even tell me how bad the stenosis is or what portion of opening I have left. I didn't know enough to ask at the time, so I'll be going back with a list of questions after a couple more urgent tests and results. From what I know so far, he's the main dr doing the surgeries here in Vancouver. If it comes to it and I need surgery down the road, I want to have a plan in place to see someone I like and feel more confident with. I am about 2.5 hours from Seattle and my sister lives in Issaquah, so if you still have good results and/or confidence in your doc, that might be an option for me. Thanks! I hope you're doing well.

me2
05-21-2014, 03:50 PM
Great news. I know what a relief it is to breath better. I had two ss surgeries. The second one came about a year after the first one. I thought at that point I would end up doing one a year- good news.

That was several years ago. Subglottic stenosis is a mysterious process (even for weggies) and there is no way to know how many or how few will be needed. It follows a path independent of our disease process.
The good news is that the procedure CAN be repeated as much as necessary to keep our airways open. There is no way to know, or guarantee if or when you will need another procedure- actually this is just like before you had the procedure.
No guarantees so might as well hope for the best. Lots of people do very well- why not you??