Sinus Surgery... Good or Evil??

[myohmymary]

My daughter is 7 and has DDF508, She has had 2 sinus surgeries (the latest 3 months ago).
She was hospitalized 3 days ago and on Friday the dr.s want to do another sinus surgery (with a g-tube, tonsils out, adenoids out, and place a ph probe).
The adult CF pulminologist at our center came to our room to warn me against the sinus surgery. He feels sinus washes as well as optimizing medications are a safer route.
It is obvious the surgery didn't work last time and he says that with the sinus surgery the ENT will essentially drill open the sinus cavity and open the drain for the sinus infection to drain the infectiondirectly to her lungs.
Does anyone have any advice on this?
Is my daughter the only one that is having such a hard time with her sinuses?
If this is a common issue, than why don't CF centers have ENT specialists as part of the team, and why aren't there more studies on the effectiveness of these sinus surgeries in contrast to the risk, or at least the long term lung function of kids with sinus problems....
GRRRRR just venting out loud.
I would really love any input here!

 

[myohmymary]

My daughter is 7 and has DDF508, She has had 2 sinus surgeries (the latest 3 months ago).
She was hospitalized 3 days ago and on Friday the dr.s want to do another sinus surgery (with a g-tube, tonsils out, adenoids out, and place a ph probe).
The adult CF pulminologist at our center came to our room to warn me against the sinus surgery. He feels sinus washes as well as optimizing medications are a safer route.
It is obvious the surgery didn't work last time and he says that with the sinus surgery the ENT will essentially drill open the sinus cavity and open the drain for the sinus infection to drain the infectiondirectly to her lungs.
Does anyone have any advice on this?
Is my daughter the only one that is having such a hard time with her sinuses?
If this is a common issue, than why don't CF centers have ENT specialists as part of the team, and why aren't there more studies on the effectiveness of these sinus surgeries in contrast to the risk, or at least the long term lung function of kids with sinus problems....
GRRRRR just venting out loud.
I would really love any input here!

 

[imported_Momto2]

You're not alone. I had roughly 8-10 sinus surgeries prior to age 21. The benefit for me only seemed to last a few weeks to a month at best. I have found that my sinuses infect my lungs quite a bit and I have almost constant sinusitis and allergies. Each hospitalization for the surgery was fairly traumatic on my body. The final one, they had a lot of trouble knocking me out, I kept trying to wake up. Needless to say, that was the last one I had, it was too risky from my POV. Anyhow, I dont think the surgery really helped me. Now I do a lot of saline nasal washes and exercising, which I do every day, seems to bring on a drippy nose, which washes my sinuses out nicely. (although its a PITA). Something to note- my lung function did not improve or decrease with the sinus surgeries. What seemed to bring it down the most was the stress of being a parent. But THAT I have no regrets about! Good luck with your daughter. I did manage to find this abstract for you. There are others.

Ear Nose Throat J. 2004 Feb;83(2):118-21.
Endoscopic sinus surgery in cystic fibrosis: effects on pulmonary function and ideal body weight.
Jarrett WA, Militsakh O, Anstad M, Manaligod J.
Source

Division of Otolaryngology-Head and Neck Surgery, Department of Surgery, University of Kentucky College of Medicine, Lexington, USA.
Abstract

There is some question as to whether surgical treatment of sinus disease in patients with cystic fibrosis improves pulmonary function or helps patients achieve their ideal body weight. To investigate this matter, we retrospectively studied 17 children with cystic fibrosis who had undergone endoscopic sinus surgery at the University of Kentucky College of Medicine over a 15-year period. All patients had advanced sinus disease at the time of surgery. Although there was an overall increase in mean pulmonary function values, which peaked 1 month postoperatively, no statistically significant improvements were maintained at 6 and 12 months. Nor was there any significant change in these patients' percentage of ideal body weight.

 

[imported_Momto2]

You're not alone. I had roughly 8-10 sinus surgeries prior to age 21. The benefit for me only seemed to last a few weeks to a month at best. I have found that my sinuses infect my lungs quite a bit and I have almost constant sinusitis and allergies. Each hospitalization for the surgery was fairly traumatic on my body. The final one, they had a lot of trouble knocking me out, I kept trying to wake up. Needless to say, that was the last one I had, it was too risky from my POV. Anyhow, I dont think the surgery really helped me. Now I do a lot of saline nasal washes and exercising, which I do every day, seems to bring on a drippy nose, which washes my sinuses out nicely. (although its a PITA). Something to note- my lung function did not improve or decrease with the sinus surgeries. What seemed to bring it down the most was the stress of being a parent. But THAT I have no regrets about! Good luck with your daughter. I did manage to find this abstract for you. There are others.

Ear Nose Throat J. 2004 Feb;83(2):118-21.
Endoscopic sinus surgery in cystic fibrosis: effects on pulmonary function and ideal body weight.
Jarrett WA, Militsakh O, Anstad M, Manaligod J.
Source

Division of Otolaryngology-Head and Neck Surgery, Department of Surgery, University of Kentucky College of Medicine, Lexington, USA.
Abstract

There is some question as to whether surgical treatment of sinus disease in patients with cystic fibrosis improves pulmonary function or helps patients achieve their ideal body weight. To investigate this matter, we retrospectively studied 17 children with cystic fibrosis who had undergone endoscopic sinus surgery at the University of Kentucky College of Medicine over a 15-year period. All patients had advanced sinus disease at the time of surgery. Although there was an overall increase in mean pulmonary function values, which peaked 1 month postoperatively, no statistically significant improvements were maintained at 6 and 12 months. Nor was there any significant change in these patients' percentage of ideal body weight.

 

[Ratatosk]

Our doctor has referred us to an ENT who is familiar wcf. We weren't comfortable with our local ENTs as it seems that kids treated locally undergo numerous surgeries at a very young age. DS has just started having issues with snoring and inability to breathe thru his left nostril. So he could have inflammation or polyps. In any event it's begun to affect his sleeping, etc.

 

[Ratatosk]

Our doctor has referred us to an ENT who is familiar wcf. We weren't comfortable with our local ENTs as it seems that kids treated locally undergo numerous surgeries at a very young age. DS has just started having issues with snoring and inability to breathe thru his left nostril. So he could have inflammation or polyps. In any event it's begun to affect his sleeping, etc.

 

[twentythreeyearsandcounting]

My son is 23 and it is extremely common to have significant sinusitis and polyps with CF. However, I never felt that the several surgeries he underwent were helpful. The polyps come back whether you do surgery or not. It's the nature of the disease. I agree with the doctor that told you that sinus washes you can do yourself would be much more helpful. Your daughter won't like them at first but she will get used to it. My son did them too and got used to it. It was better than continuing to do surgery. It is not painful at all. It's just the sensation of water in your nose that feels funny. As people with CF get older they tend to not get the problems as much, or at least I was told that by an ENT and this has been the case with my son. But when he was young he was sick all the time with his sinuses even though he has had several surgeries. Has she ever tried Singulair. It's for allergies but is known for decreasing polyps and did wonders for my son. He improved so much after starting that and has been on it for years. His sinus problems really improved after that and with the sinus washes. You could ask your doctor if she could try that if she hasn't already. Good Luck.