Megan's ENT appt. update

coasterqueen wrote: They showed us the CT scan of her sinues. WOW! One sinus cavity has a LOT of thickening and another one is completely 100% blocked. Then her nasal cavity is somewhat thick, but not bad. The doctor is going to have another ENT specialist look at the CT scans and see if it warrants surgery, but that is the ONLY possibility, from what she tells us to help her. The bad thing is the surgery is not a permanent solution. People who have sinus surgeries usually have several surgeries in a lifetime and that's adults. So she could have to have many in her life to relieve the problems. We go back in a month, but the specialist is going to call us in a day or two with his diagnosis. In the meantime we are to use a rinse something similar to a netti pot, and an antibiotic nasal spray. She said the specialist could say we could go the steroid route, but with the one that is 100% blockage it doesn't always work. The aren't really sure what's blocking it, but the scan did not show polyps, so it's strange is how they put it to us. So we are still in a waiting game. I just didn't want to hear surgery Poor kid doesn't need to go through anything more, ya know. I'll update when the specialist calls us back.

my2monkeyboys replied: Oh I'm sorry Karen! I hope they find something else that works before the surgery.

mckayleesmom replied: Tons of prayers. Hope they figure this all out soon.

MommyToAshley replied: Hugs and Prayers. I hope everything works out without surgery.

mom21kid2dogs replied: Poor thing. Do they think this is the source of all her fevers?

coasterqueen replied:
It's possible. A lot of times they say it's the adenoids that can cause it. When they took her adenoids out the fevers went away for about 6 months and then came back, which means there was more of a problem and this doctor thinks the 100% blockage could be whats causing it, but they can't promise. Megan's infectious disease doc also said once we get the Kawasaki Disease under control he plans to do an entire immunology workup (more extensive than they've already done) if the fevers are still there. So I guess we just have to wait and see.

ETA: Even if they don't go with surgery nothing is permanent. The doc said steroids and antibiotics only temporarily help it. Since she has the blockage, the only way to get completely rid of it is to scrape it out, and even that's not permanent. They don't like to do too much steroids because of the damage it can do long term to the body and the antibiotics because they fear resistance over time. The surgery is the only longer term solution - it's not permanent either, but will last longer.

~Roo'sMama~ replied: Ugh, poor Megan! Surgery wouldn't sound too bad if it would be a permanent fix, but the prospect of having to have many surgeries over her lifetime makes it seem much worse I'm sure. I'm sorry Karen!

lovemy2 replied: I had a 100% blocked sinus from a polyp - they did 2 surgeries - it was only temporary relief without a major surgery up through your mouth, etc. all they really do is pop it and drain it. Poor kid - they are not fun surgeries I can tell you that and I was an adult...

Our Lil' Family replied: Sorry to hear about that, although glad y'all got some answers. So can she not breathe out of that nostril?

I have a question, when she does have drainage is it really thick? I am a tad worried about Andrew's snot (sorry, no better word)....it's always really thick. I just wonder if it can't drain properly and will back up like Megan's.

coasterqueen replied:
She doesn't really act like one with a stuffy nose, moreso she sleeps and breathes through her mouth, always has since birth. I can't remember the name of the sinus cavity, I believe it's the maxillary cavity that is 100% blocked. She has thickening in the frontal cavities and the ethmoids are slightly thickened, but not bad.

Here's a pic that kind of shows you where they are at, but it's all still really confusing to me.


ETA: her drainage has for the most part been clear, not really thick until this last time after she got KD, she got a very severe sinus infection and it was yellow/green and extremely thick. They are actually hoping she gets another one soon so we can bring her in and they can do tests on the snot. You could always ask to see an ENT, and do it when he has it going on and they can tell you.

coasterqueen replied: It kinda stinks for her, too, because I have severe sinuses, just haven't gone to an ENT to do anything about it, I just manage it with my allergist. My father had the sinus surgery 6 years ago and needs it again. He's had all kinds of issues due to his sinuses/ So I guess she gets it from us.

youngmomofone replied: Wow, poor baby . She has been through/dealt with so much I hate to see something else added to her list of things to have to do often in her life.

I do wonder if I should see an ENT because I feel like I have a blockage to where I can't breath or smell 100% out of one side of my nose.