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

[elephant]

Cathy I agree you sound like your situation is not controlled. I hope this round of cytoxan will make you feel better soon. I myself for years had stomach problems, they could never figure it out. It is all gone now. Keep asking questions, glad Janw is here to help you.

[Sangye]

Cathy, did you know Wegs can cause GI involvement? Many rheumys don't know this. I suggest you see a Wegs specialist-- your case is far too complicated for a regular doc.

[JanW]

Cathy, I agree with the others, and would also caution you that sometimes surgeons are doing sinus surgeries to 'clean things out' when what should be happening is that the WG should be being controlled with proper meds. I met so many poor people who had any number of sinus surgeries all to no avail because their WGs wasn't controlled.

Do you docs confirm that you stenosis is presenting in the correct place for it to likely be WG (especially since you say you are c-ANCA). Stenosis is also common in relapsing polychrodritis (sp?) and sarcoidosis, but presents in different part of the windpipe each. It's VERY common to have subglottis involvement in wegs.

And myomicin-C is standard of care in these surgeries. Unfortunately docs don't agree on the dose -- mine said some surgeons use 10 times as much for their patients as he will. He's conservative because after all, it's chemotherapy (hence running a pregnancy test before surgery).

[cathy2330]

I did not know about Wegs involving the GI but that is what the rheumatologist is thinking. Something about small and med blood vessels not contracting properly so food is not getting broken down properly therefore causing the stomache pain. I am hoping it will get fixed once I start treatment again. To be honest docs have thought it may be sarcoisosis but apparently treatment is pretty much the same as for Wegs. There are pretty much certain that it is an autoimmune type problem and the treatments generally involve the same immnosuppresent and pred. I don't know how many Weg patients have stenosis in the bronchis, I know it seems fairly common in the treachea which I also have. It was actually in the bronchi first. My lungs always sound clear because the narrowing is higher up in the bronchi, almost where it shapes into a Y , from the trachea then into the left and right bronchi. real problem area seems to be that I also have it lower in the bronchi's now also which stents cannot reach and also quite hard to get to to dialate. Need to have a flexible bronchscopy and also rigid bronchoscopy which is a little harder on the area and sometimes leads to swelling and it is not as flexible which causes problems. I have only had the one sinus surgery in my lifetime no one ever really connected the nasal narrowing to the lung narrowing until January of this year. I am using the salt and water sollution with the syringe and doing that frequently throughout the day but somedays it is quite painful. I do not have a runny nose at all it is very hard, crusty inflammation and ulcers that go all the way down the nasal passage. I am not sure yet if the doc will be doing the myomicin C but if it will lead to the narrowing staying open for longer I think it should be done. We shall see. I am going to read up (google) about the relapsing polychrodritis as it has been mentioned before but I just do not seem to fit one specific disease except that it seems to be autoimmune....

[Jack]

I am using the salt and water sollution with the syringe and doing that frequently throughout the day but somedays it is quite painful.

Are you making up your own mix? If so, make sure you include some Baking Soda and have the solution warm.

[cathy2330]

Thanks Jack yes I am making my own mix but I did not know about the baking soda I have just been using salt. How much baking soda should I use?

[Jack]

I think I used to use half the quantity of salt used -

2 cups of warm water
1 tsp salt
1/2 tsp baking soda

I think it is the baking soda that is supposed to stop the stinging, but the first squirt always used to make my eyes water a little!

[Sangye]

And use salt that is specifically for nasal rinses (sold as Neti pot salt, maybe other names). It's purified and does not have sand in it. If you use table salt, you can damage the mucous membranes with chemicals and sand granules.

[cathy2330]

thanks guys I have just been using coarse salt but will get the appropriate salt and baking soda. It really does seem to help do you know what it does? Is it breaking down the hard crusting and ulcers. I know it is not like a usual runny nose as I have nothing to blow but it sure feels full in a hard sort of way. Hard to describe unless you actually feel it. I am going today to get the right stuff and also the baking soda as I have only been using the salt. Thanks for you help! Cathy

[Jack]

I used regular table salt for at least a year and it seemed to be OK to me, but I would think that sea salt might have some unknown constituents in it.

Sangye, you'll have us worried about everything we touch soon!