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sinus surgery...every 3 months

M

mneville

Guest
Ugh. Despite years of trying everything for Aidan's sinuses (he's 6) we are now on a schedule of sinus surgery every 3 months. Plus he's sick with sinus infections between those months. This is so draining. He does hours of treatments each day which keeps his lungs great but he's in constant pain from sinuses. He needs IVS with each surgery and is about to get his 6th PICC line. He is beyond frustrated and always on antibiotics which are so limited because he cultures MRSA for two years.

I just need hope. We just got back from the National CF Conference and have hope with the Vertex for Double Deltas but I seriously don't know how much longer he can hang in here...He feels horrible all the time expect for the 4 weeks of relief after each surgery. Then it starts all over again...So frustrated...This is not a great way for a 6 year old to live....Suggestions? Hope?

Megan
 
M

mneville

Guest
Ugh. Despite years of trying everything for Aidan's sinuses (he's 6) we are now on a schedule of sinus surgery every 3 months. Plus he's sick with sinus infections between those months. This is so draining. He does hours of treatments each day which keeps his lungs great but he's in constant pain from sinuses. He needs IVS with each surgery and is about to get his 6th PICC line. He is beyond frustrated and always on antibiotics which are so limited because he cultures MRSA for two years.

I just need hope. We just got back from the National CF Conference and have hope with the Vertex for Double Deltas but I seriously don't know how much longer he can hang in here...He feels horrible all the time expect for the 4 weeks of relief after each surgery. Then it starts all over again...So frustrated...This is not a great way for a 6 year old to live....Suggestions? Hope?

Megan
 
M

mneville

Guest
Ugh. Despite years of trying everything for Aidan's sinuses (he's 6) we are now on a schedule of sinus surgery every 3 months. Plus he's sick with sinus infections between those months. This is so draining. He does hours of treatments each day which keeps his lungs great but he's in constant pain from sinuses. He needs IVS with each surgery and is about to get his 6th PICC line. He is beyond frustrated and always on antibiotics which are so limited because he cultures MRSA for two years.
<br />
<br />I just need hope. We just got back from the National CF Conference and have hope with the Vertex for Double Deltas but I seriously don't know how much longer he can hang in here...He feels horrible all the time expect for the 4 weeks of relief after each surgery. Then it starts all over again...So frustrated...This is not a great way for a 6 year old to live....Suggestions? Hope?
<br />
<br />Megan
 
W

welshwitch

Guest
Just out of curiosity, does he need sinus surgery every 3 months because his blockage (polyps?) just grows back immediately?

When I was 9 I had sinus surgery at age 9, 10, and then 13. Then there was a 17 year-- yes. that's 17 year gap between surgeries. I'm 30 now, and I'm getting my first operation in 17 years done on November 4th. I also have a deviated septum, which is a new thing.

I think I recall that puberty slowed the sinus issues in CF patients (from what I remember my mom telling me). I had 0 problems for many many years.

Here is some hope. I'm 30, living a full and productive life with CF. I have a fantastic outlook and prognosis. I just look at sinus surgery as a bump in the road.
 
W

welshwitch

Guest
Just out of curiosity, does he need sinus surgery every 3 months because his blockage (polyps?) just grows back immediately?

When I was 9 I had sinus surgery at age 9, 10, and then 13. Then there was a 17 year-- yes. that's 17 year gap between surgeries. I'm 30 now, and I'm getting my first operation in 17 years done on November 4th. I also have a deviated septum, which is a new thing.

I think I recall that puberty slowed the sinus issues in CF patients (from what I remember my mom telling me). I had 0 problems for many many years.

Here is some hope. I'm 30, living a full and productive life with CF. I have a fantastic outlook and prognosis. I just look at sinus surgery as a bump in the road.
 
W

welshwitch

Guest
Just out of curiosity, does he need sinus surgery every 3 months because his blockage (polyps?) just grows back immediately?
<br />
<br />When I was 9 I had sinus surgery at age 9, 10, and then 13. Then there was a 17 year-- yes. that's 17 year gap between surgeries. I'm 30 now, and I'm getting my first operation in 17 years done on November 4th. I also have a deviated septum, which is a new thing.
<br />
<br />I think I recall that puberty slowed the sinus issues in CF patients (from what I remember my mom telling me). I had 0 problems for many many years.
<br />
<br />Here is some hope. I'm 30, living a full and productive life with CF. I have a fantastic outlook and prognosis. I just look at sinus surgery as a bump in the road.
 
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