Ever had nasal polyps because of CF

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donny71

Guest
constantly.

i cannot get rid of em ,

i have had them since i was 3 or 4 i have had 6 or so surgeries, with some relief. i had one surgery that lasted 2 years and after then i would get constant flare ups , regular spays/sinus rinsing give temporary relief but then hours later i am stuffed up.

after my most recent surgery, (last year) we did pre/post cat scans of my sinues, and hte post one was worse then the pre one (a few months later) we even went a province over for a second opinion, and he said there is nothing more they can do but if it become a problem again (infection spreading to chest constantly) or there is too much pain then we can do surgery for temp relief.

they have done so much drilling in my nose for drainage i found out that there running out of stuff to drill out!

oh and most recently i found out that my sinuses are resistant to antibiotics (most common ones like tobramyacin cipro etc and most sprays so watch out!)

just posting this to let anyone out there with severe polyp sinus issues know... your not alone!
 
D

donny71

Guest
constantly.

i cannot get rid of em ,

i have had them since i was 3 or 4 i have had 6 or so surgeries, with some relief. i had one surgery that lasted 2 years and after then i would get constant flare ups , regular spays/sinus rinsing give temporary relief but then hours later i am stuffed up.

after my most recent surgery, (last year) we did pre/post cat scans of my sinues, and hte post one was worse then the pre one (a few months later) we even went a province over for a second opinion, and he said there is nothing more they can do but if it become a problem again (infection spreading to chest constantly) or there is too much pain then we can do surgery for temp relief.

they have done so much drilling in my nose for drainage i found out that there running out of stuff to drill out!

oh and most recently i found out that my sinuses are resistant to antibiotics (most common ones like tobramyacin cipro etc and most sprays so watch out!)

just posting this to let anyone out there with severe polyp sinus issues know... your not alone!
 
T

Trevsmom

New member
My son just had his polyps removed 3 weeks ago. It's been great so far and we are doing the saline wash and sprays to keep them down. They think he will have to have surgery every 2-3 years to aid his breathing. This is how he was diagnosed with CF. We had no idea, although we had cousins on both sides of the family with CF. We are hopeful he will maintain the super good pulmonary report we got before the surgery<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

Trevsmom

New member
My son just had his polyps removed 3 weeks ago. It's been great so far and we are doing the saline wash and sprays to keep them down. They think he will have to have surgery every 2-3 years to aid his breathing. This is how he was diagnosed with CF. We had no idea, although we had cousins on both sides of the family with CF. We are hopeful he will maintain the super good pulmonary report we got before the surgery<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

Trevsmom

New member
My son just had his polyps removed 3 weeks ago. It's been great so far and we are doing the saline wash and sprays to keep them down. They think he will have to have surgery every 2-3 years to aid his breathing. This is how he was diagnosed with CF. We had no idea, although we had cousins on both sides of the family with CF. We are hopeful he will maintain the super good pulmonary report we got before the surgery<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

Trevsmom

New member
My son just had his polyps removed 3 weeks ago. It's been great so far and we are doing the saline wash and sprays to keep them down. They think he will have to have surgery every 2-3 years to aid his breathing. This is how he was diagnosed with CF. We had no idea, although we had cousins on both sides of the family with CF. We are hopeful he will maintain the super good pulmonary report we got before the surgery<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

Trevsmom

New member
My son just had his polyps removed 3 weeks ago. It's been great so far and we are doing the saline wash and sprays to keep them down. They think he will have to have surgery every 2-3 years to aid his breathing. This is how he was diagnosed with CF. We had no idea, although we had cousins on both sides of the family with CF. We are hopeful he will maintain the super good pulmonary report we got before the surgery<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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northernlight

New member
My son is 15 with C.F., and has very bad headaches from sinus infections. He has had 3 surgeries and is still with pressure headaches. Nothing seems to relieve the pain. He uses Neilmed sinus rinse 2x/day. Do you have these very bad headaches? What are you using to relieve the pain?
 
N

northernlight

New member
My son is 15 with C.F., and has very bad headaches from sinus infections. He has had 3 surgeries and is still with pressure headaches. Nothing seems to relieve the pain. He uses Neilmed sinus rinse 2x/day. Do you have these very bad headaches? What are you using to relieve the pain?
 
N

northernlight

New member
My son is 15 with C.F., and has very bad headaches from sinus infections. He has had 3 surgeries and is still with pressure headaches. Nothing seems to relieve the pain. He uses Neilmed sinus rinse 2x/day. Do you have these very bad headaches? What are you using to relieve the pain?
 
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