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Thread: Subglottic Stenosis - What's the recovery from the surgery like?

  1. #21
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    I think what you've gone through is pretty tough, elephant. When they stop my breathing I will be completely asleep, and when I wake up I will be able to breathe better than I have in five years. If that and the saddle nose deformity (which really doesn't look that bad -- even my kids have never pointed it out) are the worst things I will have to deal with, I will consider myself lucky. I look at some of you who have lost your kidneys, sight, hearing -- a 20 minute surgery doesn't seem so bad (although I am aware of course it will likely have to be done a few times).

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    So is this surgery considered airway reconstruction surgery, or is it dilation? My dr is so scared to do ANYTHING with my airway until he says i get completely off prednisone, which my rheumy has already told him may be never or it may be a while. The bad part is, I have a trach. He put it in last year and Ive just been "hangin out" waiting for him to get ready to do somethin. Im from tn, and so NY is out for me. So frustrating. I talked him into doing a dilation this thursday, and he said if it holds for 3 months then he may take the trach out. has anyone had dilations? how long did your throat stay "open" after the dilation? I understand that people have to perform these a few times up to alot, but im just hoping this works so i can get this out. Any info would be great.

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    Ticklytoes, how about Cleveland Clinic in Ohio? They have some great doctors. That is closer than NY. You probably need a second opinion. Wish you well.

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    Why do you have the trach, Ticklytoes? My ENT is operating on me and I'm currently not having medical treatment for WGs at all. No pred or anything. That will commence after the surgery. Rheumo tried me on mtx but liver enzymes shot up and he didn't want to do anything to jeopardize the surgery. Both ENT and rheumo made clear to me that these two things are independent of one another -- that is, he couldn't wait for the WG to be 'under control' before dilating the airway - I don't have that kind of time. It so happens that the scar tissue isn't inflammed, so it's probably been there for a long while. He will swab the area with both chemo drugs (to retard cell growth) and steroids (to reduce swelling) but he's not sending me home with any meds (even pain). Yes, he has told me that it will likely have to be done more than once -- but he was talking 3 times, not a dozen times like some people on here. I agree with elephant -- I think that you need a second opinion. This is a balloon dilation, no reconstruction, and there are several different ways to do them in terms of meds administered, how the docs make the cuts, even whether you are intubated. I have minimal tracheal involvement (top two rings but my whole subglottic area is all scarred up.

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    Ticklytoes-- even if you can't travel to a vasculitis center or to NY, your doc could consult with a VF doc. Your doc sounds very inexperienced with Wegs. Please get a Wegs specialist involved somehow.

    Also, if your reason for not traveling to NY or another VF doc is inability to afford airfare, there are numerous charitable orgs that fly medical patients for free. That may not be your reason, but I just thought I'd share the info.

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    Ticklytoes -- I forgot to mention that my ENT doc is a VF consultant. His name is Dr. Robert Lebovics. (pronounced LEE-BOW-ICKS). That having been said, I personally wouldn't have windpipe surgery with someone without a lot of experience. There are cases on this very board where the surgery has been suspended because the surgeon got in and couldn't deal with what he or she was looking at. Imagine how disappointing that must be! And the risks of the surgery, while not high, include death, collasped lung and uncontrolled bleeding among the top three.

    Also, have no idea if you case is affected by long-term trach use or not.

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    well, my rheumy tried to call him to have him consult with her and he never called her back. I know he's busy. My ENT doesnt seem to think that going in and "messing" around will do any good, and i don't think he's willing to perform dilations multiple times as I believe it takes. what do i do? he is an ent specialist and vandy and seems as if he would be offended if i ask him to call levobics. what do you guys think i should do? yes, the airfare and the question of how long i will have to stay or how many times i will have to return for surgery all play huge factors...i just dont have the money. also, i wonder if insurance will even pay when its so far away? gosh...im so frustrated.

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    sangye...what orgs help with airfare?

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    jan...i have the trach because the area above my vocal chords narrowed down to 5mm. since then, weve gotten bloodwork under control and my throat has been stable. i too, think that my throat is independent of my wg, just necause last sept we tried to taper the pred too fast and i couldnt hear well...but my throat didnt do a thing. it stayed the same. he says that while the cause is still there, everything he does will just come right back, the same way it came the first time. jan, could you ask dr levobics about this for me? when do you go back to see him?

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    My husband had a good idea -- you could try to call Dr. Lebovics yourself -- his number is 212 262 4444. Seems like it's worth a shot and you don't have anything to lose, assuming that you know your own medical case pretty well. Best scenerio of course would be for docs to talk doc to doc so ask your ENT--your rheumo can try to talk to him but it wouldn't be a peer-to-peer consult. For instance, Leibovics isn't not going to talk about what kind of meds you should or shouldn't be on -- he's the guy that looks in your nose or throat and fixes it.

    I also don't understand why you have a trach if you are a 5. I'm no more than a 3.5 at this point and can breathe just fine (not well on exertion, but I wouldn't be running to the hospital complaining of shortness of breath, know what I mean). I have probably been at this size for years. Has your windpipe collasped or otherwise been destroyed? My bloodwork is no where near stable, but this is considered a serious enough case that they will just go in and do what they need to do. They know with WGs that they will need to do it again anyway, but since remission is no guarantee (as my rheumy says), they can hardly wait for that. Besides ss involvement doesn't denote progression or seriousness of the underlying disease...so you're right, you won't necessarily get increased throat symptoms if you are in a flare.

    It sounds to me as though perhaps no one is taking prompt action because you have the trach, and maybe the only person that is really inconvencing is you?

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