CF/Sinusitis/TOBI/Nasel Rinse

C

cowhstone

New member
I am a 31 year old CFer. My biggest struggle with the disease is related to my sinuses. About a year ago I had extensive sinus surgery, but I continue to experience sinusitis, including pressure and pain. I have been working with my ENT on a maintenance routine to keep inflamation and infection under control. Currently, I am rinsing with a saline rinse once a day which includes a mixture of pulmicort and salt. Additionally, I mix TOBI into my rinses using a four week on/ four week off pattern. When I am using the TOBI, I feel great. When I am not using the TOBI, I am at my worse. I feel TOBI is working miracles up there. The ironic part is my insurance won't cover the TOBI because they say the use has no proven scientific benefit.

My question for other CFers...

Do you use TOBI in your rinses?
How often do you use it?
Are you happy with the results?

Also, as I have been researching this subject, I came across a sinus nebulizer, in which you place the nebulizer in the nostril (opposed to the mouth) to make direct contact with the sinus cavity. Any CFers out there using this type of nebulizer? Results???
 
C

cowhstone

New member
I am a 31 year old CFer. My biggest struggle with the disease is related to my sinuses. About a year ago I had extensive sinus surgery, but I continue to experience sinusitis, including pressure and pain. I have been working with my ENT on a maintenance routine to keep inflamation and infection under control. Currently, I am rinsing with a saline rinse once a day which includes a mixture of pulmicort and salt. Additionally, I mix TOBI into my rinses using a four week on/ four week off pattern. When I am using the TOBI, I feel great. When I am not using the TOBI, I am at my worse. I feel TOBI is working miracles up there. The ironic part is my insurance won't cover the TOBI because they say the use has no proven scientific benefit.

My question for other CFers...

Do you use TOBI in your rinses?
How often do you use it?
Are you happy with the results?

Also, as I have been researching this subject, I came across a sinus nebulizer, in which you place the nebulizer in the nostril (opposed to the mouth) to make direct contact with the sinus cavity. Any CFers out there using this type of nebulizer? Results???
 
C

cowhstone

New member
I am a 31 year old CFer. My biggest struggle with the disease is related to my sinuses. About a year ago I had extensive sinus surgery, but I continue to experience sinusitis, including pressure and pain. I have been working with my ENT on a maintenance routine to keep inflamation and infection under control. Currently, I am rinsing with a saline rinse once a day which includes a mixture of pulmicort and salt. Additionally, I mix TOBI into my rinses using a four week on/ four week off pattern. When I am using the TOBI, I feel great. When I am not using the TOBI, I am at my worse. I feel TOBI is working miracles up there. The ironic part is my insurance won't cover the TOBI because they say the use has no proven scientific benefit.

My question for other CFers...

Do you use TOBI in your rinses?
How often do you use it?
Are you happy with the results?

Also, as I have been researching this subject, I came across a sinus nebulizer, in which you place the nebulizer in the nostril (opposed to the mouth) to make direct contact with the sinus cavity. Any CFers out there using this type of nebulizer? Results???
 
C

cowhstone

New member
I am a 31 year old CFer. My biggest struggle with the disease is related to my sinuses. About a year ago I had extensive sinus surgery, but I continue to experience sinusitis, including pressure and pain. I have been working with my ENT on a maintenance routine to keep inflamation and infection under control. Currently, I am rinsing with a saline rinse once a day which includes a mixture of pulmicort and salt. Additionally, I mix TOBI into my rinses using a four week on/ four week off pattern. When I am using the TOBI, I feel great. When I am not using the TOBI, I am at my worse. I feel TOBI is working miracles up there. The ironic part is my insurance won't cover the TOBI because they say the use has no proven scientific benefit.

My question for other CFers...

Do you use TOBI in your rinses?
How often do you use it?
Are you happy with the results?

Also, as I have been researching this subject, I came across a sinus nebulizer, in which you place the nebulizer in the nostril (opposed to the mouth) to make direct contact with the sinus cavity. Any CFers out there using this type of nebulizer? Results???
 
C

cowhstone

New member
I am a 31 year old CFer. My biggest struggle with the disease is related to my sinuses. About a year ago I had extensive sinus surgery, but I continue to experience sinusitis, including pressure and pain. I have been working with my ENT on a maintenance routine to keep inflamation and infection under control. Currently, I am rinsing with a saline rinse once a day which includes a mixture of pulmicort and salt. Additionally, I mix TOBI into my rinses using a four week on/ four week off pattern. When I am using the TOBI, I feel great. When I am not using the TOBI, I am at my worse. I feel TOBI is working miracles up there. The ironic part is my insurance won't cover the TOBI because they say the use has no proven scientific benefit.
<br />
<br />My question for other CFers...
<br />
<br />Do you use TOBI in your rinses?
<br />How often do you use it?
<br />Are you happy with the results?
<br />
<br />Also, as I have been researching this subject, I came across a sinus nebulizer, in which you place the nebulizer in the nostril (opposed to the mouth) to make direct contact with the sinus cavity. Any CFers out there using this type of nebulizer? Results???
 
K

kmaried

New member
Hi Colleen,

I use a gentamycin rinse since my sinus surgery (only a few weeks ago). I'm supposed to get off of it in a week, and then see how I do.

Maybe you can alternate with another abx on your month off, like we do inhaled?

Good luck
Kris
27 w/cf
 
K

kmaried

New member
Hi Colleen,

I use a gentamycin rinse since my sinus surgery (only a few weeks ago). I'm supposed to get off of it in a week, and then see how I do.

Maybe you can alternate with another abx on your month off, like we do inhaled?

Good luck
Kris
27 w/cf
 
K

kmaried

New member
Hi Colleen,

I use a gentamycin rinse since my sinus surgery (only a few weeks ago). I'm supposed to get off of it in a week, and then see how I do.

Maybe you can alternate with another abx on your month off, like we do inhaled?

Good luck
Kris
27 w/cf
 
K

kmaried

New member
Hi Colleen,

I use a gentamycin rinse since my sinus surgery (only a few weeks ago). I'm supposed to get off of it in a week, and then see how I do.

Maybe you can alternate with another abx on your month off, like we do inhaled?

Good luck
Kris
27 w/cf
 
K

kmaried

New member
Hi Colleen,
<br />
<br />I use a gentamycin rinse since my sinus surgery (only a few weeks ago). I'm supposed to get off of it in a week, and then see how I do.
<br />
<br />Maybe you can alternate with another abx on your month off, like we do inhaled?
<br />
<br />Good luck
<br />Kris
<br />27 w/cf
 
S

sdelorenzo

Guest
My son is using the Tobi as a spray in the nose after his sinus surgery two weeks ago. He only has a few more days of it.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 10 months no cf
 
S

sdelorenzo

Guest
My son is using the Tobi as a spray in the nose after his sinus surgery two weeks ago. He only has a few more days of it.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 10 months no cf
 
S

sdelorenzo

Guest
My son is using the Tobi as a spray in the nose after his sinus surgery two weeks ago. He only has a few more days of it.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 10 months no cf
 
S

sdelorenzo

Guest
My son is using the Tobi as a spray in the nose after his sinus surgery two weeks ago. He only has a few more days of it.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 10 months no cf
 
S

sdelorenzo

Guest
My son is using the Tobi as a spray in the nose after his sinus surgery two weeks ago. He only has a few more days of it.
<br />Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 10 months no cf
 
J

jdubbs

New member
Hey there Colleen -

I'm curious about the sinus nebulizer as well. Just last week I was asking my ENT if he knew of anything similar to what you're describing. He didn't offhand. I was more thinking in terms of the hypertonic saline, but it would be good for tobi as well. I went to a pharmacy... they had a mask I could probably fashion into something reasonable, but it looked like a nuisance to clean. I didn't bother.

-James
 
J

jdubbs

New member
Hey there Colleen -

I'm curious about the sinus nebulizer as well. Just last week I was asking my ENT if he knew of anything similar to what you're describing. He didn't offhand. I was more thinking in terms of the hypertonic saline, but it would be good for tobi as well. I went to a pharmacy... they had a mask I could probably fashion into something reasonable, but it looked like a nuisance to clean. I didn't bother.

-James
 
J

jdubbs

New member
Hey there Colleen -

I'm curious about the sinus nebulizer as well. Just last week I was asking my ENT if he knew of anything similar to what you're describing. He didn't offhand. I was more thinking in terms of the hypertonic saline, but it would be good for tobi as well. I went to a pharmacy... they had a mask I could probably fashion into something reasonable, but it looked like a nuisance to clean. I didn't bother.

-James
 
J

jdubbs

New member
Hey there Colleen -

I'm curious about the sinus nebulizer as well. Just last week I was asking my ENT if he knew of anything similar to what you're describing. He didn't offhand. I was more thinking in terms of the hypertonic saline, but it would be good for tobi as well. I went to a pharmacy... they had a mask I could probably fashion into something reasonable, but it looked like a nuisance to clean. I didn't bother.

-James
 
J

jdubbs

New member
Hey there Colleen -
<br />
<br />I'm curious about the sinus nebulizer as well. Just last week I was asking my ENT if he knew of anything similar to what you're describing. He didn't offhand. I was more thinking in terms of the hypertonic saline, but it would be good for tobi as well. I went to a pharmacy... they had a mask I could probably fashion into something reasonable, but it looked like a nuisance to clean. I didn't bother.
<br />
<br />-James
 
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