I wanted to chime in and tell you our experience. Abby started sinus surgeries when she was probably 4 and we have been through 10 total now, but I wouldn't trade for them. Before we had her sinus surgery she was miserable!! She couldn't breathe through her nose at all and snored extremely bad. She was so sick, constantly running fever and on this antibiotic then that trying to beat whatever was growing in her poor sinus'. Finally we had the surgery and let me tell you what a different baby girl I had!! She was so much better. It was such a relief not to see her struggling to breathe when she would eat, drink, and sleep. They told us that the polyps were so thick that it was hiding the bacteria behind them where the antibiotics just couldn't knock out what was making her run fever, not to mention that she was totally clogged up. Now she is on the sinus rinses(love them) and a sinus steroid spray(veramyst), hypertonic saline, singular, and zyrtec(even though she has no allergies, so the testing showed). The sinus surgery was a quick fix that I wouldn't hesitate to do again and again if it meant she felt better, and the sinus surgeries are not that bad or she has a high pain tolerance. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Good Luck!!!
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I wanted to chime in and tell you our experience. Abby started sinus surgeries when she was probably 4 and we have been through 10 total now, but I wouldn't trade for them. Before we had her sinus surgery she was miserable!! She couldn't breathe through her nose at all and snored extremely bad. She was so sick, constantly running fever and on this antibiotic then that trying to beat whatever was growing in her poor sinus'. Finally we had the surgery and let me tell you what a different baby girl I had!! She was so much better. It was such a relief not to see her struggling to breathe when she would eat, drink, and sleep. They told us that the polyps were so thick that it was hiding the bacteria behind them where the antibiotics just couldn't knock out what was making her run fever, not to mention that she was totally clogged up. Now she is on the sinus rinses(love them) and a sinus steroid spray(veramyst), hypertonic saline, singular, and zyrtec(even though she has no allergies, so the testing showed). The sinus surgery was a quick fix that I wouldn't hesitate to do again and again if it meant she felt better, and the sinus surgeries are not that bad or she has a high pain tolerance. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Good Luck!!!
tesorotiffa
New member
I always noticed as a teenager and young adult that my lung flare-ups always seemed to start at the sinus level. I took Sudafed all of the time. I would mention this to my CF doc, but they never seemed concerned. Heck they never even did a CT scan of my sinuses or anything. It wasn't until I started seeing a CF doc in Shreveport (about 5 or 6 years ago) that they focused more on the sinuses. I had my first sinus surgery when I was about 24. Since then I've had 3 of them. Now they are very proactive about the sinus/allergy aspect of things. I am on Nasonex, Astelin, neilmed rinses 2xdaily, and Xyzal oral allergy medication. One thing about jumping right on sinus surgery is that it seems like once you open that can of worms, you won't be able to close it. I had a little bit of bone and a few polyps removed during my first sinus surgery. I have been lucky in that the polyps have never grown back, which I've heard can be a big problem for people.
tesorotiffa
New member
I always noticed as a teenager and young adult that my lung flare-ups always seemed to start at the sinus level. I took Sudafed all of the time. I would mention this to my CF doc, but they never seemed concerned. Heck they never even did a CT scan of my sinuses or anything. It wasn't until I started seeing a CF doc in Shreveport (about 5 or 6 years ago) that they focused more on the sinuses. I had my first sinus surgery when I was about 24. Since then I've had 3 of them. Now they are very proactive about the sinus/allergy aspect of things. I am on Nasonex, Astelin, neilmed rinses 2xdaily, and Xyzal oral allergy medication. One thing about jumping right on sinus surgery is that it seems like once you open that can of worms, you won't be able to close it. I had a little bit of bone and a few polyps removed during my first sinus surgery. I have been lucky in that the polyps have never grown back, which I've heard can be a big problem for people.
tesorotiffa
New member
I always noticed as a teenager and young adult that my lung flare-ups always seemed to start at the sinus level. I took Sudafed all of the time. I would mention this to my CF doc, but they never seemed concerned. Heck they never even did a CT scan of my sinuses or anything. It wasn't until I started seeing a CF doc in Shreveport (about 5 or 6 years ago) that they focused more on the sinuses. I had my first sinus surgery when I was about 24. Since then I've had 3 of them. Now they are very proactive about the sinus/allergy aspect of things. I am on Nasonex, Astelin, neilmed rinses 2xdaily, and Xyzal oral allergy medication. One thing about jumping right on sinus surgery is that it seems like once you open that can of worms, you won't be able to close it. I had a little bit of bone and a few polyps removed during my first sinus surgery. I have been lucky in that the polyps have never grown back, which I've heard can be a big problem for people.
T
tammykrumrey
Guest
My Hannah just had her first sinus surgery last week. I had asked her clinic to recommend an ENT, because she was going on oral antibiotics almost every month for an increase in cough that just kept coming back. I was confident that this cough kept starting in the sinuses. Hannah has never been able to breath through one side of her nose, and I was pretty sure that they needed to be looked at. She had been having headaches and running fevers, and with an FEV1 of 105%, I just had to think her problems were from her sinuses.
When we met with the ENT, prior to looking at Hannah, she told me that she doesn't recommend removing of polyps in patients with CF because of the fact that once you start, they keep coming back. BUT, after she looked at her, she changed her pace. She ordered a CT scan and after talking with CF doc, agreed that Hannah was in fact a perfect canidate for the surgery.
I was so worried about how the recovery would be, because I had heard that it was difficult. But she did FANTASTIC! Hardly any pain at all. I was shocked that it took 3 hours to do the surgery! They said there were a lot of polyps and puss and mucus up in there! They told Hannah that she would be really congested after the procedure, but she said that the congestion she felt was nothing compared to how she felt prior to having it done!
When we met with the ENT, prior to looking at Hannah, she told me that she doesn't recommend removing of polyps in patients with CF because of the fact that once you start, they keep coming back. BUT, after she looked at her, she changed her pace. She ordered a CT scan and after talking with CF doc, agreed that Hannah was in fact a perfect canidate for the surgery.
I was so worried about how the recovery would be, because I had heard that it was difficult. But she did FANTASTIC! Hardly any pain at all. I was shocked that it took 3 hours to do the surgery! They said there were a lot of polyps and puss and mucus up in there! They told Hannah that she would be really congested after the procedure, but she said that the congestion she felt was nothing compared to how she felt prior to having it done!
T
tammykrumrey
Guest
My Hannah just had her first sinus surgery last week. I had asked her clinic to recommend an ENT, because she was going on oral antibiotics almost every month for an increase in cough that just kept coming back. I was confident that this cough kept starting in the sinuses. Hannah has never been able to breath through one side of her nose, and I was pretty sure that they needed to be looked at. She had been having headaches and running fevers, and with an FEV1 of 105%, I just had to think her problems were from her sinuses.
When we met with the ENT, prior to looking at Hannah, she told me that she doesn't recommend removing of polyps in patients with CF because of the fact that once you start, they keep coming back. BUT, after she looked at her, she changed her pace. She ordered a CT scan and after talking with CF doc, agreed that Hannah was in fact a perfect canidate for the surgery.
I was so worried about how the recovery would be, because I had heard that it was difficult. But she did FANTASTIC! Hardly any pain at all. I was shocked that it took 3 hours to do the surgery! They said there were a lot of polyps and puss and mucus up in there! They told Hannah that she would be really congested after the procedure, but she said that the congestion she felt was nothing compared to how she felt prior to having it done!
When we met with the ENT, prior to looking at Hannah, she told me that she doesn't recommend removing of polyps in patients with CF because of the fact that once you start, they keep coming back. BUT, after she looked at her, she changed her pace. She ordered a CT scan and after talking with CF doc, agreed that Hannah was in fact a perfect canidate for the surgery.
I was so worried about how the recovery would be, because I had heard that it was difficult. But she did FANTASTIC! Hardly any pain at all. I was shocked that it took 3 hours to do the surgery! They said there were a lot of polyps and puss and mucus up in there! They told Hannah that she would be really congested after the procedure, but she said that the congestion she felt was nothing compared to how she felt prior to having it done!
T
tammykrumrey
Guest
My Hannah just had her first sinus surgery last week. I had asked her clinic to recommend an ENT, because she was going on oral antibiotics almost every month for an increase in cough that just kept coming back. I was confident that this cough kept starting in the sinuses. Hannah has never been able to breath through one side of her nose, and I was pretty sure that they needed to be looked at. She had been having headaches and running fevers, and with an FEV1 of 105%, I just had to think her problems were from her sinuses.
When we met with the ENT, prior to looking at Hannah, she told me that she doesn't recommend removing of polyps in patients with CF because of the fact that once you start, they keep coming back. BUT, after she looked at her, she changed her pace. She ordered a CT scan and after talking with CF doc, agreed that Hannah was in fact a perfect canidate for the surgery.
I was so worried about how the recovery would be, because I had heard that it was difficult. But she did FANTASTIC! Hardly any pain at all. I was shocked that it took 3 hours to do the surgery! They said there were a lot of polyps and puss and mucus up in there! They told Hannah that she would be really congested after the procedure, but she said that the congestion she felt was nothing compared to how she felt prior to having it done!
When we met with the ENT, prior to looking at Hannah, she told me that she doesn't recommend removing of polyps in patients with CF because of the fact that once you start, they keep coming back. BUT, after she looked at her, she changed her pace. She ordered a CT scan and after talking with CF doc, agreed that Hannah was in fact a perfect canidate for the surgery.
I was so worried about how the recovery would be, because I had heard that it was difficult. But she did FANTASTIC! Hardly any pain at all. I was shocked that it took 3 hours to do the surgery! They said there were a lot of polyps and puss and mucus up in there! They told Hannah that she would be really congested after the procedure, but she said that the congestion she felt was nothing compared to how she felt prior to having it done!
AleksandraKaczynska
New member
Since Asia is sall I was told by her cf physical therapist to do the end of inhalation - the last 2 - 1 minute from Saline using a mask and later - when she'll be older to do nasal rinces.
Also a mom and prsident of the cf fund here told me the same.
The cf docs seem to not see the problem here.
Also a mom and prsident of the cf fund here told me the same.
The cf docs seem to not see the problem here.
AleksandraKaczynska
New member
Since Asia is sall I was told by her cf physical therapist to do the end of inhalation - the last 2 - 1 minute from Saline using a mask and later - when she'll be older to do nasal rinces.
Also a mom and prsident of the cf fund here told me the same.
The cf docs seem to not see the problem here.
Also a mom and prsident of the cf fund here told me the same.
The cf docs seem to not see the problem here.
AleksandraKaczynska
New member
Since Asia is sall I was told by her cf physical therapist to do the end of inhalation - the last 2 - 1 minute from Saline using a mask and later - when she'll be older to do nasal rinces.
Also a mom and prsident of the cf fund here told me the same.
The cf docs seem to not see the problem here.
Also a mom and prsident of the cf fund here told me the same.
The cf docs seem to not see the problem here.
I wanted to share because I seem to be the exception to the norm here. While I did hva slots of sinus infections as a kid once I hit puberty they pretty much stopped. I had a sinus ct done once while still under the care of the peds team and it was normal, no polyps. Since then I've had no sinus infections at all, I still get occasional sinus headaches but that usually is when my allergies are at their worst. When I had a head ct and my nose/scoped by the ent during my transplant eval the doctor asked when I had sinus surgery and I said never. He told me he'd never seen such good polyp free sinuses on any other cf patient. In case you're wondering if it's mutation related, I am double DF508, so "normal" cfer
I wanted to share because I seem to be the exception to the norm here. While I did hva slots of sinus infections as a kid once I hit puberty they pretty much stopped. I had a sinus ct done once while still under the care of the peds team and it was normal, no polyps. Since then I've had no sinus infections at all, I still get occasional sinus headaches but that usually is when my allergies are at their worst. When I had a head ct and my nose/scoped by the ent during my transplant eval the doctor asked when I had sinus surgery and I said never. He told me he'd never seen such good polyp free sinuses on any other cf patient. In case you're wondering if it's mutation related, I am double DF508, so "normal" cfer
I wanted to share because I seem to be the exception to the norm here. While I did hva slots of sinus infections as a kid once I hit puberty they pretty much stopped. I had a sinus ct done once while still under the care of the peds team and it was normal, no polyps. Since then I've had no sinus infections at all, I still get occasional sinus headaches but that usually is when my allergies are at their worst. When I had a head ct and my nose/scoped by the ent during my transplant eval the doctor asked when I had sinus surgery and I said never. He told me he'd never seen such good polyp free sinuses on any other cf patient. In case you're wondering if it's mutation related, I am double DF508, so "normal" cfer
I wanted to share because I seem to be the exception to the norm here. While I did hva slots of sinus infections as a kid once I hit puberty they pretty much stopped. I had a sinus ct done once while still under the care of the peds team and it was normal, no polyps. Since then I've had no sinus infections at all, I still get occasional sinus headaches but that usually is when my allergies are at their worst. When I had a head ct and my nose/scoped by the ent during my transplant eval the doctor asked when I had sinus surgery and I said never. He told me he'd never seen such good polyp free sinuses on any other cf patient. In case you're wondering if it's mutation related, I am double DF508, so "normal" cfer. Just my opinion but if you can avoid it I wouldn't rush into using sinus surgery as an option unless you have to, I know several people with and without cf who have sinus surgery and not only have I been told its extremely uncomfortable but once you start you keep having to do it like several people have said. I know one girl who has surgery like once a yr or every other yr. but still it's different for everyone, maybe you're child will grow out of it like I did maybe not. Just wanted you to know that not all of us end up needing surgery.
I wanted to share because I seem to be the exception to the norm here. While I did hva slots of sinus infections as a kid once I hit puberty they pretty much stopped. I had a sinus ct done once while still under the care of the peds team and it was normal, no polyps. Since then I've had no sinus infections at all, I still get occasional sinus headaches but that usually is when my allergies are at their worst. When I had a head ct and my nose/scoped by the ent during my transplant eval the doctor asked when I had sinus surgery and I said never. He told me he'd never seen such good polyp free sinuses on any other cf patient. In case you're wondering if it's mutation related, I am double DF508, so "normal" cfer. Just my opinion but if you can avoid it I wouldn't rush into using sinus surgery as an option unless you have to, I know several people with and without cf who have sinus surgery and not only have I been told its extremely uncomfortable but once you start you keep having to do it like several people have said. I know one girl who has surgery like once a yr or every other yr. but still it's different for everyone, maybe you're child will grow out of it like I did maybe not. Just wanted you to know that not all of us end up needing surgery.
I wanted to share because I seem to be the exception to the norm here. While I did hva slots of sinus infections as a kid once I hit puberty they pretty much stopped. I had a sinus ct done once while still under the care of the peds team and it was normal, no polyps. Since then I've had no sinus infections at all, I still get occasional sinus headaches but that usually is when my allergies are at their worst. When I had a head ct and my nose/scoped by the ent during my transplant eval the doctor asked when I had sinus surgery and I said never. He told me he'd never seen such good polyp free sinuses on any other cf patient. In case you're wondering if it's mutation related, I am double DF508, so "normal" cfer. Just my opinion but if you can avoid it I wouldn't rush into using sinus surgery as an option unless you have to, I know several people with and without cf who have sinus surgery and not only have I been told its extremely uncomfortable but once you start you keep having to do it like several people have said. I know one girl who has surgery like once a yr or every other yr. but still it's different for everyone, maybe you're child will grow out of it like I did maybe not. Just wanted you to know that not all of us end up needing surgery.
D
Deb
Guest
As an adult with CF I do the rinses with the NeilMed bottle. I also have been told to use Mucinex. Just the regular not the DS. This seems to help.
I have had two sinus surgeries, one for a fungus ball. Overall I can't say these helped much except to remove the ball. Recovering was not pleasant and I wouldn't think it would be easy for a child.
I have constant sinus problems that the rinse can't get so I go a couple of times a year and my ENT goes in and suctions out the mucus build-up. This is somewhat painful but very helpful.
I have had two sinus surgeries, one for a fungus ball. Overall I can't say these helped much except to remove the ball. Recovering was not pleasant and I wouldn't think it would be easy for a child.
I have constant sinus problems that the rinse can't get so I go a couple of times a year and my ENT goes in and suctions out the mucus build-up. This is somewhat painful but very helpful.
D
Deb
Guest
As an adult with CF I do the rinses with the NeilMed bottle. I also have been told to use Mucinex. Just the regular not the DS. This seems to help.
I have had two sinus surgeries, one for a fungus ball. Overall I can't say these helped much except to remove the ball. Recovering was not pleasant and I wouldn't think it would be easy for a child.
I have constant sinus problems that the rinse can't get so I go a couple of times a year and my ENT goes in and suctions out the mucus build-up. This is somewhat painful but very helpful.
I have had two sinus surgeries, one for a fungus ball. Overall I can't say these helped much except to remove the ball. Recovering was not pleasant and I wouldn't think it would be easy for a child.
I have constant sinus problems that the rinse can't get so I go a couple of times a year and my ENT goes in and suctions out the mucus build-up. This is somewhat painful but very helpful.
D
Deb
Guest
As an adult with CF I do the rinses with the NeilMed bottle. I also have been told to use Mucinex. Just the regular not the DS. This seems to help.
I have had two sinus surgeries, one for a fungus ball. Overall I can't say these helped much except to remove the ball. Recovering was not pleasant and I wouldn't think it would be easy for a child.
I have constant sinus problems that the rinse can't get so I go a couple of times a year and my ENT goes in and suctions out the mucus build-up. This is somewhat painful but very helpful.
I have had two sinus surgeries, one for a fungus ball. Overall I can't say these helped much except to remove the ball. Recovering was not pleasant and I wouldn't think it would be easy for a child.
I have constant sinus problems that the rinse can't get so I go a couple of times a year and my ENT goes in and suctions out the mucus build-up. This is somewhat painful but very helpful.