What is a trach?

[katarzena]

edit: actually tracheostomy? and why do some wg patients need it?

[Jack]

Some Wegener's patients suffer from Tracheal Stenosis, this means a narrowing of the wind pipe and causes difficulty in breathing. A tracheostomy is an operation which makes an opening in the wind pipe through the neck in an area below the narrowing. This allows you to at least breath! An operation can then be performed to dilate the wind pipe, but this is often not 100% successful and may have to be repeated. There is a whole section on the subject elsewhere on the Forum pages.

[katarzena]

Oh I see. Thanks for answering. Is it common for wg patients to have tracheostomy? And how do you see if you'll be needing one?

[Jack]

It is one of the few things that I have not had so you'll have to rely on someone else's expertise.
I'm sure someone will come along with some first hand experience.

[JanW]

It's relatively uncommon -- less than 20 percent of WG patients have tracheal or subglottic involvement. Of those that do, probably most will end up with continued scarring necessitating surgery (like I had). Jack is right -- it's not so much that the surgery is unsuccessful but rather that they have not discovered anything that stop the scar tissue from returning -- it's only a matter of how quickly it will return. Mine has not in three months, but I had surgery in addition to balloon dilation (some people just have a balloon to spread the tissue apart -- my doc actually cuts into the tissue but very few are trained in how to do that. You only end up with a trach if no one caught it in time or you are from someplace where they simply don't know how to/are unwilling to do this surgery (for a whole host of reasons, mostly because they lack expertise because this is a rare condition). I had a pretty small opening and I still didn't have a trach -- my doc was confident that he could schedule surgery before my windpipe collasped.

You'll know if you have this condition because it will be increasingly difficult to breathe.

[katarzena]

Oh I see. Thanks for answering JanW I hope you're ok now.
I guess if it's tracheal stenosis it is more common for patients with uppe respiratory involvment? I hope not!
I was wondering if it happend to you before you were diagnosed or during the treatment?

[Jack]

Not sure it is as simple as that. I've had a huge amount of sinus and lung trouble, but no stenosis yet.

[JanW]

No, Katazena, bottom line is that it isn't really that common at all. However, if you have it, it is only caused by a few known conditions, WG being the top one.

I've never had lung trouble, and my sinus involvement has been extremely minimal, although it was sinus problems that eventually led to my diagnosis.

I had it for five years and the docs thought it was asthma. I never got any better on the steroids, although they did manage to wreck my bones ;-(.

[katarzena]

That is really comforting to hear that it isn't common. The hole in my septum is giving me enough worries on top of everything, so I got really frustrated when I read about the stenosis!
Did you have your nose fixed? I remember you saying that you'd like to do that as soon as possible.
I have only one more question about the stenosis, I see it is important to tell about even a minor difficulty in breathing but is the stenosis when you can't breath at all, like even through your mouth? Or if my nose is closed but I can breath through my mouth: should I mention that? (I have sinus involvment so I had my nose closed for quite a while before diagnosed so I thought that's normal during the treatment, until remission and not necessary to mention).

[Jack]

With stenosis you can't breath through nose or mouth because the restriction is in the region of your throat. You can expect breathing difficulties when breathing through your nose if you have sinus involvement, but should be able to relieve this to a large extent with regular use of a saline rinse.