ENT visit for CF what to expect

[Beccamom]

I was recently diagnosed with CF as an adult and I have seen ENTs over the years for chronic sinusitis and repeats infections. My Cf pulmonologist referred me to the ENT that many of the other CF patients see. What should expect at this appointment. I have a horrible fear of the unknown. Is it normal to do CF sputum cultures from a swab taken from the sinus? What should I know to ask. Are polyps always visible on a CT?

My previous experience with ENT was random antibiotics that would work for a couple weeks then the sinus infection came right back. Then the ENTs would want allergy shots which I did for over 4 years with no improvement. My scratch tests show minor allergies to most things and yet my IGE is very low normal and so the pulmonologist feels I have no allergies and just sensitive skin. I also have more problems in the cold and flu season and feel best by the ocean other then that no seasonal changes.


Any advice is appreciated.

 

[beleache]

I would think your new ENT will want a CT scan of your sinuses. Did you get scoped by your previous ENT ? If not you probably will. They spray something in your nose to numb you. Then stick a scope in (it shouldn't hurt) & can see a lot plus get cultures if need be. Sometimes besides oral abx, which should be given for a pretty long stretch, they will have you do nasal irrigations w/ abx in them. Do you do nasal irrigations on a daily basis ? If not I would start if I were you, it could help you avoid sinus surgery .. I think the majority of us have more problems in the cold/flu season.. & the ocean is supposed to be good for CFers, I'm pretty sure thats where the idea for hypertonic solution came from.. I hope I helped answer some of your questions.

 

[welshwitch]

Yep, the ENT can definitely be scary...but you need not fear! It's a relatively quick, painless way for the doc to see what's going on up there. Like Beleache said, s/he will stick the long scope up your nose to see what is up there. If you are having blockages, sinus infections, etc. then they can take a look.

In my experience, if sinus surgery is on the table (is this something that is a possibility for you?) the next step after looking in your nose is to get a full blown CT scan of the inside of your sinus cavity. Oftentimes the sinus doc can only see so far with the scope and the CT scan is there they really can see the structural extent of sinus disease. If you do end up needing surgery, this CT scan is the "map" that the docs will use to operate.

I remember being terrified to get my sinus surgery 2 years ago....but for the most part it was a very simple and mostly do-able surgery. The aftermath wasn't so fun but overall it was much less barbaric than it had been when I was a child (I've had this procedure done a few times now) and the technology and streamlined techniques they have in place now make it a much easier experience. AND the BEST part is getting to breathe again through your nose

Good luck!

 

[Beccamom]

Beleache and Welshwitch, Thanks for posting. I did have CT scan and I have under developed sinuses. I have the blockages in the hardest to get to sinuses. I have done sinus rinses for years with hypertonic saline and antibiotic in the rinse. I did have the scope.

I will ask for cultures to be taken if possible. I think surgery is all that is left, so I am very nervous. I also have a deviated septum, so does that make recovery worse. It seems like with CF it is more important to get the sinus infections under control to avoid them leading to lung infections.

Friday is my lucky day.