Nasal Washes

cfbigbrother · Feb 21, 2009

I know alot of the adult on here do saline nasal washes or neti pots. THis is what I was wondering, if anyone does them with Tobramycin. Our non-CF pulmonologist recommended trying this, our CF doctor has never heard of it, but our non=CF pulmonologist who is a family friend thought it might be helpful for the severe recurrent sinus issues. ANyone have any ideas?

cfbigbrother · Feb 21, 2009

I know alot of the adult on here do saline nasal washes or neti pots. THis is what I was wondering, if anyone does them with Tobramycin. Our non-CF pulmonologist recommended trying this, our CF doctor has never heard of it, but our non=CF pulmonologist who is a family friend thought it might be helpful for the severe recurrent sinus issues. ANyone have any ideas?

cfbigbrother · Feb 21, 2009

I know alot of the adult on here do saline nasal washes or neti pots. THis is what I was wondering, if anyone does them with Tobramycin. Our non-CF pulmonologist recommended trying this, our CF doctor has never heard of it, but our non=CF pulmonologist who is a family friend thought it might be helpful for the severe recurrent sinus issues. ANyone have any ideas?

cfbigbrother · Feb 21, 2009

I know alot of the adult on here do saline nasal washes or neti pots. THis is what I was wondering, if anyone does them with Tobramycin. Our non-CF pulmonologist recommended trying this, our CF doctor has never heard of it, but our non=CF pulmonologist who is a family friend thought it might be helpful for the severe recurrent sinus issues. ANyone have any ideas?

cfbigbrother · Feb 21, 2009

I know alot of the adult on here do saline nasal washes or neti pots. THis is what I was wondering, if anyone does them with Tobramycin. Our non-CF pulmonologist recommended trying this, our CF doctor has never heard of it, but our non=CF pulmonologist who is a family friend thought it might be helpful for the severe recurrent sinus issues. ANyone have any ideas?

fr3ak · Feb 21, 2009

I do regular sinus washes with flo-care (pre made sachets) and do get relief to some extent.

I have tried doing tobra irrigations but it burnt the living hell out of my sinuses and I couldn't tolerate it, it would take my breath, my eyes would water and my sinus passage would burn something chronic...

I have also tried pulmicort irrigations as I was told they were effective, same thing burnt really really bad, I don't know if my sinuses are just so raw which is why I get so much burning...

Baby shampoo is another one that was recommended as it is suppose to reduce the mucosal lining - burning again...

I currently use FESS which is a sugar type mix, I still get the chronic burning but it does seem to reduce the inflamation...

Good luck!

fr3ak · Feb 21, 2009

I do regular sinus washes with flo-care (pre made sachets) and do get relief to some extent.

I have tried doing tobra irrigations but it burnt the living hell out of my sinuses and I couldn't tolerate it, it would take my breath, my eyes would water and my sinus passage would burn something chronic...

I have also tried pulmicort irrigations as I was told they were effective, same thing burnt really really bad, I don't know if my sinuses are just so raw which is why I get so much burning...

Baby shampoo is another one that was recommended as it is suppose to reduce the mucosal lining - burning again...

I currently use FESS which is a sugar type mix, I still get the chronic burning but it does seem to reduce the inflamation...

Good luck!

fr3ak · Feb 21, 2009

I do regular sinus washes with flo-care (pre made sachets) and do get relief to some extent.

I have tried doing tobra irrigations but it burnt the living hell out of my sinuses and I couldn't tolerate it, it would take my breath, my eyes would water and my sinus passage would burn something chronic...

I have also tried pulmicort irrigations as I was told they were effective, same thing burnt really really bad, I don't know if my sinuses are just so raw which is why I get so much burning...

Baby shampoo is another one that was recommended as it is suppose to reduce the mucosal lining - burning again...

I currently use FESS which is a sugar type mix, I still get the chronic burning but it does seem to reduce the inflamation...

Good luck!

fr3ak · Feb 21, 2009

I do regular sinus washes with flo-care (pre made sachets) and do get relief to some extent.

I have tried doing tobra irrigations but it burnt the living hell out of my sinuses and I couldn't tolerate it, it would take my breath, my eyes would water and my sinus passage would burn something chronic...

I have also tried pulmicort irrigations as I was told they were effective, same thing burnt really really bad, I don't know if my sinuses are just so raw which is why I get so much burning...

Baby shampoo is another one that was recommended as it is suppose to reduce the mucosal lining - burning again...

I currently use FESS which is a sugar type mix, I still get the chronic burning but it does seem to reduce the inflamation...

Good luck!

fr3ak · Feb 21, 2009

I do regular sinus washes with flo-care (pre made sachets) and do get relief to some extent.
 
 I have tried doing tobra irrigations but it burnt the living hell out of my sinuses and I couldn't tolerate it, it would take my breath, my eyes would water and my sinus passage would burn something chronic...
 
 I have also tried pulmicort irrigations as I was told they were effective, same thing burnt really really bad, I don't know if my sinuses are just so raw which is why I get so much burning...
 
 Baby shampoo is another one that was recommended as it is suppose to reduce the mucosal lining - burning again...
 
 I currently use FESS which is a sugar type mix, I still get the chronic burning but it does seem to reduce the inflamation...
 
 Good luck!

Skye · Feb 21, 2009

I have been dealing with a frontal sinus infection so I have been very aggressive with a new mix that was recommended to me. I guess they use it for some of the post transplant patients at Stanford to keep PA at bay.

It is a mix of a tiny bit of betadine, xylitol, nasal rinse packet, and sterile water. I then do a xylitol sterile saline nose spray. Xylitol is a natural sugar that inhibits the growth of bacteria.

I have been able to avoid surgery or IV's and went to my ENT yesterday and he said things have improved. Though I do have to go in for an irrigation in a couple of weeks.

I WOULD not do anything that you have not asked your CF clinic about. I made sure I asked my docs before I did this rinse. I am not sure about doing Tobra for that. I have heard of people doing a gentamyacin cream. That might be something to ask about.

Skye · Feb 21, 2009

I have been dealing with a frontal sinus infection so I have been very aggressive with a new mix that was recommended to me. I guess they use it for some of the post transplant patients at Stanford to keep PA at bay.

It is a mix of a tiny bit of betadine, xylitol, nasal rinse packet, and sterile water. I then do a xylitol sterile saline nose spray. Xylitol is a natural sugar that inhibits the growth of bacteria.

I have been able to avoid surgery or IV's and went to my ENT yesterday and he said things have improved. Though I do have to go in for an irrigation in a couple of weeks.

I WOULD not do anything that you have not asked your CF clinic about. I made sure I asked my docs before I did this rinse. I am not sure about doing Tobra for that. I have heard of people doing a gentamyacin cream. That might be something to ask about.

Skye · Feb 21, 2009

I have been dealing with a frontal sinus infection so I have been very aggressive with a new mix that was recommended to me. I guess they use it for some of the post transplant patients at Stanford to keep PA at bay.

It is a mix of a tiny bit of betadine, xylitol, nasal rinse packet, and sterile water. I then do a xylitol sterile saline nose spray. Xylitol is a natural sugar that inhibits the growth of bacteria.

I have been able to avoid surgery or IV's and went to my ENT yesterday and he said things have improved. Though I do have to go in for an irrigation in a couple of weeks.

I WOULD not do anything that you have not asked your CF clinic about. I made sure I asked my docs before I did this rinse. I am not sure about doing Tobra for that. I have heard of people doing a gentamyacin cream. That might be something to ask about.

Skye · Feb 21, 2009

I have been dealing with a frontal sinus infection so I have been very aggressive with a new mix that was recommended to me. I guess they use it for some of the post transplant patients at Stanford to keep PA at bay.

It is a mix of a tiny bit of betadine, xylitol, nasal rinse packet, and sterile water. I then do a xylitol sterile saline nose spray. Xylitol is a natural sugar that inhibits the growth of bacteria.

I have been able to avoid surgery or IV's and went to my ENT yesterday and he said things have improved. Though I do have to go in for an irrigation in a couple of weeks.

I WOULD not do anything that you have not asked your CF clinic about. I made sure I asked my docs before I did this rinse. I am not sure about doing Tobra for that. I have heard of people doing a gentamyacin cream. That might be something to ask about.

Skye · Feb 21, 2009

I have been dealing with a frontal sinus infection so I have been very aggressive with a new mix that was recommended to me. I guess they use it for some of the post transplant patients at Stanford to keep PA at bay.
 
 It is a mix of a tiny bit of betadine, xylitol, nasal rinse packet, and sterile water. I then do a xylitol sterile saline nose spray. Xylitol is a natural sugar that inhibits the growth of bacteria.
 
 I have been able to avoid surgery or IV's and went to my ENT yesterday and he said things have improved. Though I do have to go in for an irrigation in a couple of weeks.
 
 I WOULD not do anything that you have not asked your CF clinic about. I made sure I asked my docs before I did this rinse. I am not sure about doing Tobra for that. I have heard of people doing a gentamyacin cream. That might be something to ask about.

Liza · Feb 23, 2009