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Sinus/Nasal Issues
- Thread starter Ratatosk
- Start date
We wanted an ENT who was familiar with CF, so our CF doctor referred us to a specialist in the City. Kinda un-nerving when someone with knowledge of cf sinus disease is stumped. Was kinda a hoping a leaf or a rock would just fall out and we'd be done. <img src="i/expressions/face-icon-small-smile.gif" border="0">
We wanted an ENT who was familiar with CF, so our CF doctor referred us to a specialist in the City. Kinda un-nerving when someone with knowledge of cf sinus disease is stumped. Was kinda a hoping a leaf or a rock would just fall out and we'd be done. <img src="i/expressions/face-icon-small-smile.gif" border="0">
When Shawn had his sinus scope/exam last month, it did show considerable inflammation in the area immediately surrounding his nose (I can't remember the technical anatomical term) and one side was quite obstructed- he can barely breathe out of one nostril. However, his sinuses themselves are largely clear. You can see on the sinus CT evidence of all of this- the open air spaces and no gray thickened areas along the bone, indicating lack of significant sinus disease but the localized swelling etc around the nasal area and the one side nearly shut (not exactly a deviated septum- I can't remember what he called it.)
So in Shawn's case he felt the inflammation could be caused at least in part by allergy and prescribed saline rinses and spray, which we will finally be starting (took forever to get insurance to cover). He's tried a few sprays with varying degrees of success; this new one (Astelin (sp) will be added to one he's already on. The blocked left side he feels is also at least partly anatomical based on what he could see on scope, and if the inflammation doesn't come down enough he said he could remove a bit of tissue on the inside to open up the breathing passageways.
Oh and we heard the 'cobblestoning' term when they examined Shawn at his last clinic, although in his case they said he did not have it. I asked what they meant by it- they said it is what the tissue looks like when there is a lot of congestion and postnasal drainage. (They were looking for that with Shawn because he was so sick for so long and trying to rule out sinus involvement vs lung due to resistance to tx.)
So in Shawn's case he felt the inflammation could be caused at least in part by allergy and prescribed saline rinses and spray, which we will finally be starting (took forever to get insurance to cover). He's tried a few sprays with varying degrees of success; this new one (Astelin (sp) will be added to one he's already on. The blocked left side he feels is also at least partly anatomical based on what he could see on scope, and if the inflammation doesn't come down enough he said he could remove a bit of tissue on the inside to open up the breathing passageways.
Oh and we heard the 'cobblestoning' term when they examined Shawn at his last clinic, although in his case they said he did not have it. I asked what they meant by it- they said it is what the tissue looks like when there is a lot of congestion and postnasal drainage. (They were looking for that with Shawn because he was so sick for so long and trying to rule out sinus involvement vs lung due to resistance to tx.)
When Shawn had his sinus scope/exam last month, it did show considerable inflammation in the area immediately surrounding his nose (I can't remember the technical anatomical term) and one side was quite obstructed- he can barely breathe out of one nostril. However, his sinuses themselves are largely clear. You can see on the sinus CT evidence of all of this- the open air spaces and no gray thickened areas along the bone, indicating lack of significant sinus disease but the localized swelling etc around the nasal area and the one side nearly shut (not exactly a deviated septum- I can't remember what he called it.)
So in Shawn's case he felt the inflammation could be caused at least in part by allergy and prescribed saline rinses and spray, which we will finally be starting (took forever to get insurance to cover). He's tried a few sprays with varying degrees of success; this new one (Astelin (sp) will be added to one he's already on. The blocked left side he feels is also at least partly anatomical based on what he could see on scope, and if the inflammation doesn't come down enough he said he could remove a bit of tissue on the inside to open up the breathing passageways.
Oh and we heard the 'cobblestoning' term when they examined Shawn at his last clinic, although in his case they said he did not have it. I asked what they meant by it- they said it is what the tissue looks like when there is a lot of congestion and postnasal drainage. (They were looking for that with Shawn because he was so sick for so long and trying to rule out sinus involvement vs lung due to resistance to tx.)
So in Shawn's case he felt the inflammation could be caused at least in part by allergy and prescribed saline rinses and spray, which we will finally be starting (took forever to get insurance to cover). He's tried a few sprays with varying degrees of success; this new one (Astelin (sp) will be added to one he's already on. The blocked left side he feels is also at least partly anatomical based on what he could see on scope, and if the inflammation doesn't come down enough he said he could remove a bit of tissue on the inside to open up the breathing passageways.
Oh and we heard the 'cobblestoning' term when they examined Shawn at his last clinic, although in his case they said he did not have it. I asked what they meant by it- they said it is what the tissue looks like when there is a lot of congestion and postnasal drainage. (They were looking for that with Shawn because he was so sick for so long and trying to rule out sinus involvement vs lung due to resistance to tx.)
The snot sucker was the one thing my grandmother always knew to use when I couldn't breathe right. I have set the wheels in motion to have only my second upper sinus cleansing since 1997 (first was 1999). I am having the same ENT surgeon do this one as the one in 1999. I personally requested him as he already knows about me. Maybe this will help with my issues with morning sinus drainage and therefore decrease my morning coughing issues.
The snot sucker was the one thing my grandmother always knew to use when I couldn't breathe right. I have set the wheels in motion to have only my second upper sinus cleansing since 1997 (first was 1999). I am having the same ENT surgeon do this one as the one in 1999. I personally requested him as he already knows about me. Maybe this will help with my issues with morning sinus drainage and therefore decrease my morning coughing issues.
The ENT called about DS' ct scan. Indicated it showed disease of the Maxilary, Bilateral and the Right Ethmoid Sinuses; however, wasn't surprising due to his CF. Being that the Nasonex pretty much seems to have taken care of his snoring, gasping for breath and mouth breathing at the point, we'll just keep monitoring it. The other night he was able to read a book to me clearly and without having to take gasping breaths.
The ENT called about DS' ct scan. Indicated it showed disease of the Maxilary, Bilateral and the Right Ethmoid Sinuses; however, wasn't surprising due to his CF. Being that the Nasonex pretty much seems to have taken care of his snoring, gasping for breath and mouth breathing at the point, we'll just keep monitoring it. The other night he was able to read a book to me clearly and without having to take gasping breaths.