Subglottic Stenosis

[Donnak06]

Hello everyone, its been a long time since I posted on here, I posted 4 years ago when I was diagnosed with a flare after being in remission on no meds for 25 years. Recently, I have been having breathing problems, I did have some last year which occurred when I had a cough, this time they occurred as I had a sinus infection. I ended up in emergency twice because I couldn't breathe, they put me on steroids and a nebuliser and breathing recovered so they sent me home after 24 hours with a follow up appointment on 19th January.

I am on doxycycline for 6 weeks for sinus infection plus a steroid nasal spray which seems to have improved my sinus infection but my breathing has still not gone back to normal. I have invested in a nebuliser which is helping and I'm on a 7 day course of steroids, this is my third 7 day course in 8 weeks. I presume when I see them in January they will say that I have to have some treatment although the ENT consultant said my stenosis didn't look too bad and my windpipe is big enough to get tube down if I have to have an op.

As anyone else encountered problems with stenosis when they have an infection and does breathing go back to normal once infection is resolved or is this now my new normal.

They said the reason I couldn't breathe was cos mucus was stuck in my airwave and it had dried up. Any tips on how to cough up this mucus? I don't want to end up back in emergency and it was very scary struggling to breathe.

I hate this disease just when I think I'm in remission it raises its ugly head.

Any advice would be much appreciated.

[Pete]

Hi Donna,

You may want to talk to your doc about using a saline solution in your nebuliser to break up the mucous. Or, have you tried mucinex?

[Donnak06]

Hi Pete

I am using a saline solution in the nebuliser what is mucinex? Can I get this in the Uk?

Thanks for the reply

[Pete]

Hi Pete

I am using a saline solution in the nebuliser what is mucinex? Can I get this in the Uk?

Thanks for the reply

mucinex is an over the counter drug that breaks up mucous and relieves chest congestion. Its also known as guaifenesin. The extra strength dose is 600 mg per 12 hours.

[Donnak06]

mucinex is an over the counter drug that breaks up mucous and relieves chest congestion. Its also known as guaifenesin. The extra strength dose is 600 mg per 12 hours.

"great i'll give a try, anything is worth a try".

[me2]

I have had stenosis and sinus infections and mucous stuck in my airway. Things that have worked for me: going for a brisk walk on a very cold day. Where I live (Washington state) the air can be very cold and damp. A walk or hike in this climate can dislodge subborn flakes in the airway. It also helps to reduce swelling. Even small amounts feel like a lot in the airway. Any amount of infection or irritation makes it harder to breath. Fix the infection and breathing will improve.

Another thing I do that I'm not sure I can recommend is inhale salt/soda water. I use the Neilmed packet to mix a glass of salt water. I gargle at the sink and then carefully inhale just a small amount of liquid. It's not easy to do but I am desperate enough to just patiently keep trying.
Once inhaled I of course cough and cough the liquid but the stubborn crusty flakes also get washed out. It feels wonderful after that. For me, the flakes are being caused by some acid reflux during the night.

Also, I have found that oral antibiotics are not terribly effective for my sinus infection. Plus, they are hard on my digestive system. In recent times my ENT has been prescribing me antibiotic powder that gets mixed in the Neilmed solution and wash out the sinus. I clean the sinus first with just salt water and do a final series of rinse with the antibiotic water. This has worked so well for me it makes me wonder why ENT's even prescribe oral antibiotics. The biggest drawback is that the powder has to come from a compounding pharmacy (not my regular one) and my insurance does not pay for it.

[Donnak06]

I have had stenosis and sinus infections and mucous stuck in my airway. Things that have worked for me: going for a brisk walk on a very cold day. Where I live (Washington state) the air can be very cold and damp. A walk or hike in this climate can dislodge subborn flakes in the airway. It also helps to reduce swelling. Even small amounts feel like a lot in the airway. Any amount of infection or irritation makes it harder to breath. Fix the infection and breathing will improve.

Another thing I do that I'm not sure I can recommend is inhale salt/soda water. I use the Neilmed packet to mix a glass of salt water. I gargle at the sink and then carefully inhale just a small amount of liquid. It's not easy to do but I am desperate enough to just patiently keep trying.
Once inhaled I of course cough and cough the liquid but the stubborn crusty flakes also get washed out. It feels wonderful after that. For me, the flakes are being caused by some acid reflux during the night.

Also, I have found that oral antibiotics are not terribly effective for my sinus infection. Plus, they are hard on my digestive system. In recent times my ENT has been prescribing me antibiotic powder that gets mixed in the Neilmed solution and wash out the sinus. I clean the sinus first with just salt water and do a final series of rinse with the antibiotic water. This has worked so well for me it makes me wonder why ENT's even prescribe oral antibiotics. The biggest drawback is that the powder has to come from a compounding pharmacy (not my regular one) and my insurance does not pay for it.

"Many thanks for the reply. The sinus infection seems to be improving so I'm hoping my breathing will too. I'm on a short course of steroids and they are helping. I'm not sure if I fancy trying inhaling the salt water do you mean you inhale it through your nose? I will mention the antibiotic powders to my ENT dr, this is deffo worth a try. We are going to the seaside for new year so I'm hoping the sea air will help. Could I ask are you in remission?"

[me2]

To inhale the salt water I stand at the kitchen sink and gargle with my head tilted back. It's not an idea that would help everyone but it helps me so much I had to mention it. Seaside air sounds great. Good for the soul too.
I also do a sinus rinse with saline and added steroid called budesonide. It works pretty well for me and does not have the impact on the whole body that oral steroids do.
If you end up needing tracheal dilation don't be afraid to have it done. I've had it three times and it was not that bad of a procedure. Plus , it worked really well for me. It's been several years since my last one.

Sounds like you are on the right track. I hope you continue to improve rapidly.

[Donnak06]

To inhale the salt water I stand at the kitchen sink and gargle with my head tilted back. It's not an idea that would help everyone but it helps me so much I had to mention it. Seaside air sounds great. Good for the soul too.
I also do a sinus rinse with saline and added steroid called budesonide. It works pretty well for me and does not have the impact on the whole body that oral steroids do.
If you end up needing tracheal dilation don't be afraid to have it done. I've had it three times and it was not that bad of a procedure. Plus , it worked really well for me. It's been several years since my last one.

Sounds like you are on the right track. I hope you continue to improve rapidly.

"Many thanks for the info. I think I may need to have a dilation done I'm seeing the Consultant on the 19th Jan so will get more info then. I think I will actually look forward to it if you can breathe normally again. As this has developed slowly I have adapted to it walking upstairs more slowly and talking slower and I don't think I realised how bad my breathing was. It will be nice to be normal again".

[me2]

If you have stenosis and get dilation you will be in heaven. I will never forget what it felt like after the procedure to all of a sudden be able to BREATHE .

[im so blessed]

I have had a stenosis for 8 years now. And am just now confident enough to know when i do NOT need steroids for it. As this would always be my ENTs way of treating the flakes that get stuck. Yes, i get a virus like cold sore throat cough, and then im left with shallow breathing and sticky voice. I am currantly coming out of a 3 week long ordeal and im so happy to go to my 6 month check up today and let my ENT have a look and see i did NOT need steroids. SOMETIMES i do, but not everytime. This time i tried running a humidifier right on my face at night and in the morning i was able to easily cough up my crusties. As always, one thing that works for one, does not work for all, but you might give it a try! Best wishes:smile1:

[Donnak06]

My subglottic stenosis has not bothered since last year when I got a chest infection and breathing got quite bad had to have 3 lots of steroids until it settled down. Been Ok for a year until I got sinus infection and again breathing got bad I'm on my third lot of steroids and its improving. Do they just treat yours with steroids have they not offered you a dilation? ENT said mine does not look too bad and I would be able to get a breathing tube down it if I needed an op. I'm due to see them on the 19th Jan and will ask for further info then. I think I would prefer the dilation to having to go through this every time I get a cough or cold.

[im so blessed]

My subglottic stenosis has not bothered since last year when I got a chest infection and breathing got quite bad had to have 3 lots of steroids until it settled down. Been Ok for a year until I got sinus infection and again breathing got bad I'm on my third lot of steroids and its improving. Do they just treat yours with steroids have they not offered you a dilation? ENT said mine does not look too bad and I would be able to get a breathing tube down it if I needed an op. I'm due to see them on the 19th Jan and will ask for further info then. I think I would prefer the dilation to having to go through this every time I get a cough or cold. My stenosis is so close to my vocal chords, they do not want to try another dialation. Actually, they didnt find it for 18 months after symptoms started, so most of my issue is scar tissue that they dont want to mess with, since it is so close to my vocal chords. Hence, the steroids.