Sinus Surgery

[3timesthefun]

I have 7 year old triplets all of which have CF. One of my sons is more symptomatic than the other two. He has sever chronic sinusitis, and ct scans show that almost every sinus cavity is affected, and his septum is deviated. The ENT spcialist at Children's Hospital is recommending we do surgery. He said that once we start doing surgery, he will need it again, maybe as often as every 6months to a year. I have been dragging my feet, and don't know what to do. Has anyone been through it? What can I expect? Should I wait? Any advice would be greatly appreciated. Thanks.

 

[3timesthefun]

I have 7 year old triplets all of which have CF. One of my sons is more symptomatic than the other two. He has sever chronic sinusitis, and ct scans show that almost every sinus cavity is affected, and his septum is deviated. The ENT spcialist at Children's Hospital is recommending we do surgery. He said that once we start doing surgery, he will need it again, maybe as often as every 6months to a year. I have been dragging my feet, and don't know what to do. Has anyone been through it? What can I expect? Should I wait? Any advice would be greatly appreciated. Thanks.

 

[becca23]

I have had nine sinus surgeries, the first when I was 15. It definitly does help. I would recommend it because the sinus are a big source of infection which could lead to an infection in the lungs. Is the ENT recommend by your cf docs?

 

[becca23]

I have had nine sinus surgeries, the first when I was 15. It definitly does help. I would recommend it because the sinus are a big source of infection which could lead to an infection in the lungs. Is the ENT recommend by your cf docs?

 

[Rokiss12]

cowantriplets-

hi! im kate, and i have CF...im 16, and i've had the polyup removal surgery 5 times, soon to be 6, i thought i'd share my thoughts..

today, this surgery has become 'rountine' and you can go home in a day, its rather minor compared to other surgeries. its hard however, i started getting my surgeries when i was about 7, so im used to it now.... but it is surgery, and all surgery in general is annoying.

i definitly recomend doing the surgery if your son cannot breath through his nose at all...its the kind of surgery that if he can breath, then why touch something that he doesnt have a problem with yet? unfortunatly, there could be the part where the obstruction is causing infection, which is why im getting this next surgery, even though i can still breath through my nose...

im getting the surgery over a 4 day weekend, and im supposed to be in school tuesday (the first day back) so its not a procedure where he would miss alot of school/weekly rountine.

from what i can tell, i would recommend the surgery for your son, but not untill he feels he needs it/you and the doctors.

the polyups will grow back, but there are things you can do to help. i take 1,200 mg of motrin (ibuprofen) in the morning, and another 1,200 mg at night. this is simply a study, and has never been proven to help keep polyups away for longer, but my doctor and i decided that as long as my stomach could handle it, then why not try it?

they say that you grow out of it once you hit 18ish.. i havent found that i've 'grown out of it' yet, but im only 16.

i <b>really</b> hope this helps!
Kate

 

[Rokiss12]

cowantriplets-

hi! im kate, and i have CF...im 16, and i've had the polyup removal surgery 5 times, soon to be 6, i thought i'd share my thoughts..

today, this surgery has become 'rountine' and you can go home in a day, its rather minor compared to other surgeries. its hard however, i started getting my surgeries when i was about 7, so im used to it now.... but it is surgery, and all surgery in general is annoying.

i definitly recomend doing the surgery if your son cannot breath through his nose at all...its the kind of surgery that if he can breath, then why touch something that he doesnt have a problem with yet? unfortunatly, there could be the part where the obstruction is causing infection, which is why im getting this next surgery, even though i can still breath through my nose...

im getting the surgery over a 4 day weekend, and im supposed to be in school tuesday (the first day back) so its not a procedure where he would miss alot of school/weekly rountine.

from what i can tell, i would recommend the surgery for your son, but not untill he feels he needs it/you and the doctors.

the polyups will grow back, but there are things you can do to help. i take 1,200 mg of motrin (ibuprofen) in the morning, and another 1,200 mg at night. this is simply a study, and has never been proven to help keep polyups away for longer, but my doctor and i decided that as long as my stomach could handle it, then why not try it?

they say that you grow out of it once you hit 18ish.. i havent found that i've 'grown out of it' yet, but im only 16.

i <b>really</b> hope this helps!
Kate

 

[farmfamily]

My son is now 13. He has had three sinus surgeries the first one at age 6. After the third one I (and the ENT agreed) that we would not do another one unless it was drastically needed. Even though it was relativly a minor surgery it was too hard on my son, the fear and anxiety going in to surgery. After that he began to grow quite a bit and his sinuses improved The ENT said that happens with some CF kids they grow abd their sinuses grow and get better (Something you can look forward too) He is now 13 and he is beginning to have some more sinus problems but my son said it would have to get a lot worse before he'd consider surgery.

Let me know,
Terri

 

[farmfamily]

My son is now 13. He has had three sinus surgeries the first one at age 6. After the third one I (and the ENT agreed) that we would not do another one unless it was drastically needed. Even though it was relativly a minor surgery it was too hard on my son, the fear and anxiety going in to surgery. After that he began to grow quite a bit and his sinuses improved The ENT said that happens with some CF kids they grow abd their sinuses grow and get better (Something you can look forward too) He is now 13 and he is beginning to have some more sinus problems but my son said it would have to get a lot worse before he'd consider surgery.

Let me know,
Terri

 

[Jane]

Hi,

My two sons (10 and 14 w/cf) have each had two sinus surgeries. You mentioned Children's Hospital. Are you talking about Boston? That's where we go. Our ENT guys Dr. Jones and Dr. Likameli (sp?) are GREAT!!! The boys have had good recoveries from their surgeries, usually with a course of IV antibiotics at home afterwards. They each have chronic sinusitus and went two years between surgeries. I'd recommend it.
Good luck!
Jane

 

[Jane]

Hi,

My two sons (10 and 14 w/cf) have each had two sinus surgeries. You mentioned Children's Hospital. Are you talking about Boston? That's where we go. Our ENT guys Dr. Jones and Dr. Likameli (sp?) are GREAT!!! The boys have had good recoveries from their surgeries, usually with a course of IV antibiotics at home afterwards. They each have chronic sinusitus and went two years between surgeries. I'd recommend it.
Good luck!
Jane

 

[anonymous]

My daughter had her first (and only) sinus surgery 2 years ago and it was one of the best things we did. She has not had any lung infections since the sinus clean out because the post nasal drip isn't going into her lungs. Prior to surgery she was in hospital every 3-4 months because of lung infections brought on by her sinuses. She has never had polyps but the bridge of her nose spread and her nose is really wide from all the sinus impactions. It also caused some of her facial bones to crack from the pressure. This was our fault because we put the surgery off for so long because we were also told that once you start the surgeries it will be something that has to be done twice a year.

 

[anonymous]

My daughter had her first (and only) sinus surgery 2 years ago and it was one of the best things we did. She has not had any lung infections since the sinus clean out because the post nasal drip isn't going into her lungs. Prior to surgery she was in hospital every 3-4 months because of lung infections brought on by her sinuses. She has never had polyps but the bridge of her nose spread and her nose is really wide from all the sinus impactions. It also caused some of her facial bones to crack from the pressure. This was our fault because we put the surgery off for so long because we were also told that once you start the surgeries it will be something that has to be done twice a year.

 

[Chad]

im gonna watch this one closely. I have an appointment next month with ENT about my severe chronic sinusitus. As in many posts I have stated that I knew I had it for years but my doctor always over looked it. Now I have to most likely go for surgery and Im 29 years old. I think of how many years I couldve been healthier had it not been over looked. I always said to my doc, my post nasal drip burns, I have sinus headaches every day, I cant breathe through my left nostril. "oh its just your infection, or oh its reflux" like what the #^$*. Sorry im gettin a lil heated.

Chad

 

[Chad]

im gonna watch this one closely. I have an appointment next month with ENT about my severe chronic sinusitus. As in many posts I have stated that I knew I had it for years but my doctor always over looked it. Now I have to most likely go for surgery and Im 29 years old. I think of how many years I couldve been healthier had it not been over looked. I always said to my doc, my post nasal drip burns, I have sinus headaches every day, I cant breathe through my left nostril. "oh its just your infection, or oh its reflux" like what the #^$*. Sorry im gettin a lil heated.

Chad

 

[anonymous]

Ds's doctor is not a fan of sinus surgery. Feels too many times it's unneccessary or done too often. He has put DS on a month long course of antibiotics to get rid of sinus infections and isn't opposed to removing polyps but has issues with drilling holes into the sinus cavities. I have heard people getting relief from using sinu-nebs -- it's a pari nebulizer with a nasal attachment -- shoots antibiotics right up into the nose.

 

[anonymous]

Ds's doctor is not a fan of sinus surgery. Feels too many times it's unneccessary or done too often. He has put DS on a month long course of antibiotics to get rid of sinus infections and isn't opposed to removing polyps but has issues with drilling holes into the sinus cavities. I have heard people getting relief from using sinu-nebs -- it's a pari nebulizer with a nasal attachment -- shoots antibiotics right up into the nose.

 

[anonymous]

Hi,

Went back to ENT last week and he agreed that we could wait a liitle longer, recheck in 3-4months unless he starts getting severe headaches or other symptoms. He also said that we needed to see our pulmonologist and confirm with her that it is ok to wait. My son is not a complainer, so I don't know how bad his sinuses are bothering him. The doctors said that the CT scand show next to no air moving through any of his sinuses. I guess we will wait awhile and see how it goes. CF appointment today, we will see what she says.
Thanks,
Lisa

 

[anonymous]

Hi,

Went back to ENT last week and he agreed that we could wait a liitle longer, recheck in 3-4months unless he starts getting severe headaches or other symptoms. He also said that we needed to see our pulmonologist and confirm with her that it is ok to wait. My son is not a complainer, so I don't know how bad his sinuses are bothering him. The doctors said that the CT scand show next to no air moving through any of his sinuses. I guess we will wait awhile and see how it goes. CF appointment today, we will see what she says.
Thanks,
Lisa

 

[anonymous]

Hi My son is 9 tomorrow w/CF. He has had polyps removed 3 times. His ENT was great. He said that 4 times is the most he has ever done. He also said when he worked in the CF clinic that he thought the patients with polyps had less lung problems - have no idea if that is true. But my son hasn't had much lung problems so far. He came home the same day of surgery each time. He felt 100% better after each one. He was about 90% plugged in each nostril. That is just too miserable!! He was such a good kid never complained about the surgery or anything - I think he was just relieved to breath again. I think he was like 5 for his 1st surgery. One was 6 months later then I think the 3rd one was about 1 1/2 years. It just depends how fast they come back. I would definitly do it all over again!! It's worth him feeling good!! The younger they are the faster they seem to bounce back!!

Mother of Tanner 9 wCF

 

[anonymous]

Hi My son is 9 tomorrow w/CF. He has had polyps removed 3 times. His ENT was great. He said that 4 times is the most he has ever done. He also said when he worked in the CF clinic that he thought the patients with polyps had less lung problems - have no idea if that is true. But my son hasn't had much lung problems so far. He came home the same day of surgery each time. He felt 100% better after each one. He was about 90% plugged in each nostril. That is just too miserable!! He was such a good kid never complained about the surgery or anything - I think he was just relieved to breath again. I think he was like 5 for his 1st surgery. One was 6 months later then I think the 3rd one was about 1 1/2 years. It just depends how fast they come back. I would definitly do it all over again!! It's worth him feeling good!! The younger they are the faster they seem to bounce back!!

Mother of Tanner 9 wCF