Sinus question

[mamerth]

I just got my notes from the ENT doc from my appointment earlier in the month. What the doctor says unnerves me. He says that the anatomy of my sinuses are quite distorted with significant post-operative changes (I have had 3 polyp removal surgeries). He says he could not identify any normal anatomy. He also said that "revision is going to be needed to be considered". I have one sinus cavity missing...

Anyone else have the same experience or am I dealing with something extra ordinary??

 

[mamerth]

I just got my notes from the ENT doc from my appointment earlier in the month. What the doctor says unnerves me. He says that the anatomy of my sinuses are quite distorted with significant post-operative changes (I have had 3 polyp removal surgeries). He says he could not identify any normal anatomy. He also said that "revision is going to be needed to be considered". I have one sinus cavity missing...

Anyone else have the same experience or am I dealing with something extra ordinary??

 

[mamerth]

I just got my notes from the ENT doc from my appointment earlier in the month. What the doctor says unnerves me. He says that the anatomy of my sinuses are quite distorted with significant post-operative changes (I have had 3 polyp removal surgeries). He says he could not identify any normal anatomy. He also said that "revision is going to be needed to be considered". I have one sinus cavity missing...
<br />
<br />Anyone else have the same experience or am I dealing with something extra ordinary??

 

[mneville]

Most people with CF have totally abnormal CT scans. A lot of people with CF don't even fully develop their sinuses and some don't develop any frontal sinuses. Our 6 year old has horrific sinuses since age 1. He has had 7 extensive sinus surgeries and months of IVs for them.

In many cases, they don't do surgery based on CT scans because so many CF scans are abnormal. They do it based on qulaity of life and symptoms. Aidan has horrible symptoms and in his case, he did develop all sinuses which just means there is more to get infected and filled with polyps. We have surgeries just about very 3 months now, it's horrible. Do you have symptoms?

Megan

 

[mneville]

Most people with CF have totally abnormal CT scans. A lot of people with CF don't even fully develop their sinuses and some don't develop any frontal sinuses. Our 6 year old has horrific sinuses since age 1. He has had 7 extensive sinus surgeries and months of IVs for them.

In many cases, they don't do surgery based on CT scans because so many CF scans are abnormal. They do it based on qulaity of life and symptoms. Aidan has horrible symptoms and in his case, he did develop all sinuses which just means there is more to get infected and filled with polyps. We have surgeries just about very 3 months now, it's horrible. Do you have symptoms?

Megan

 

[mneville]

Most people with CF have totally abnormal CT scans. A lot of people with CF don't even fully develop their sinuses and some don't develop any frontal sinuses. Our 6 year old has horrific sinuses since age 1. He has had 7 extensive sinus surgeries and months of IVs for them.
<br />
<br />In many cases, they don't do surgery based on CT scans because so many CF scans are abnormal. They do it based on qulaity of life and symptoms. Aidan has horrible symptoms and in his case, he did develop all sinuses which just means there is more to get infected and filled with polyps. We have surgeries just about very 3 months now, it's horrible. Do you have symptoms?
<br />
<br />Megan

 

[mamerth]

I have headaches, lots of sinus drainage and one of my sinuses is blocked with an abscess. I have PA in my sinuses. They already have an idea that surgery is necessary due to the polyps and the abscess. We are doing a CT scan next month to see what else in in there behind the abscess. Missing a sinus is a new thing for me. My other ENT didn't say anything about my sinuses being distorted... this is a new thing. The post-operative changes is also things I am now learning about from this doctor.

My old ENT did say something years ago that reconstruction may be necessary. Yikes!!

 

[mamerth]

I have headaches, lots of sinus drainage and one of my sinuses is blocked with an abscess. I have PA in my sinuses. They already have an idea that surgery is necessary due to the polyps and the abscess. We are doing a CT scan next month to see what else in in there behind the abscess. Missing a sinus is a new thing for me. My other ENT didn't say anything about my sinuses being distorted... this is a new thing. The post-operative changes is also things I am now learning about from this doctor.

My old ENT did say something years ago that reconstruction may be necessary. Yikes!!

 

[mamerth]

I have headaches, lots of sinus drainage and one of my sinuses is blocked with an abscess. I have PA in my sinuses. They already have an idea that surgery is necessary due to the polyps and the abscess. We are doing a CT scan next month to see what else in in there behind the abscess. Missing a sinus is a new thing for me. My other ENT didn't say anything about my sinuses being distorted... this is a new thing. The post-operative changes is also things I am now learning about from this doctor.
<br />
<br />My old ENT did say something years ago that reconstruction may be necessary. Yikes!!

 

[sexxiej]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mamerth</b></i>

I just got my notes from the ENT doc from my appointment earlier in the month. What the doctor says unnerves me. He says that the anatomy of my sinuses are quite distorted with significant post-operative changes (I have had 3 polyp removal surgeries). He says he could not identify any normal anatomy. He also said that "revision is going to be needed to be considered". I have one sinus cavity missing...



Anyone else have the same experience or am I dealing with something extra ordinary??</end quote></div>

no matter how many surgeries you go through it will never go away at all because of CF...i've had 3 sinus surgeries and the doctor told me that if have one more that could cause death,loss of hearing,blindness..they've told me that on all 3 surgeries but this 3rd one they said they COULD NOT do anymore..my membranes are soo thin from removing sooo much polyps that it would cause FATALITY...really scared me but i've not had one since 2005....its very normal what the ENT told you because thats pretty much what they've told me although im not sure about my sinus cavity misssing..maybe i should look back in my notes lol... your not dealing with anything extra ordinary your ok...good luck with everything and MERRY CHRISTMAS <img src="i/expressions/present.gif" border="0">

 

[sexxiej]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mamerth</b></i>

I just got my notes from the ENT doc from my appointment earlier in the month. What the doctor says unnerves me. He says that the anatomy of my sinuses are quite distorted with significant post-operative changes (I have had 3 polyp removal surgeries). He says he could not identify any normal anatomy. He also said that "revision is going to be needed to be considered". I have one sinus cavity missing...



Anyone else have the same experience or am I dealing with something extra ordinary??</end quote>

no matter how many surgeries you go through it will never go away at all because of CF...i've had 3 sinus surgeries and the doctor told me that if have one more that could cause death,loss of hearing,blindness..they've told me that on all 3 surgeries but this 3rd one they said they COULD NOT do anymore..my membranes are soo thin from removing sooo much polyps that it would cause FATALITY...really scared me but i've not had one since 2005....its very normal what the ENT told you because thats pretty much what they've told me although im not sure about my sinus cavity misssing..maybe i should look back in my notes lol... your not dealing with anything extra ordinary your ok...good luck with everything and MERRY CHRISTMAS <img src="i/expressions/present.gif" border="0">

 

[sexxiej]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mamerth</b></i>
<br />
<br />I just got my notes from the ENT doc from my appointment earlier in the month. What the doctor says unnerves me. He says that the anatomy of my sinuses are quite distorted with significant post-operative changes (I have had 3 polyp removal surgeries). He says he could not identify any normal anatomy. He also said that "revision is going to be needed to be considered". I have one sinus cavity missing...
<br />
<br />
<br />
<br />Anyone else have the same experience or am I dealing with something extra ordinary??</end quote>
<br />
<br />no matter how many surgeries you go through it will never go away at all because of CF...i've had 3 sinus surgeries and the doctor told me that if have one more that could cause death,loss of hearing,blindness..they've told me that on all 3 surgeries but this 3rd one they said they COULD NOT do anymore..my membranes are soo thin from removing sooo much polyps that it would cause FATALITY...really scared me but i've not had one since 2005....its very normal what the ENT told you because thats pretty much what they've told me although im not sure about my sinus cavity misssing..maybe i should look back in my notes lol... your not dealing with anything extra ordinary your ok...good luck with everything and MERRY CHRISTMAS <img src="i/expressions/present.gif" border="0">

 

[mamerth]

I understand that it will not go away... i understand this all too clearly. I have been dealing with this for forever...

Just wondering if anyone else had any experience with needing sinus reconstruction or having sinus deterioration. This part of sinus issues is a new road for me. The surgeries, infections and pain are not new to me. I should clarify... the sinus is not completely missing... it is there but blocked likely by scar tissue or the abscess.

I was just curious to know if there was anyone else out there with similar sinus deterioration and what their docs have done to help them.

 

[mamerth]

I understand that it will not go away... i understand this all too clearly. I have been dealing with this for forever...

Just wondering if anyone else had any experience with needing sinus reconstruction or having sinus deterioration. This part of sinus issues is a new road for me. The surgeries, infections and pain are not new to me. I should clarify... the sinus is not completely missing... it is there but blocked likely by scar tissue or the abscess.

I was just curious to know if there was anyone else out there with similar sinus deterioration and what their docs have done to help them.

 

[mamerth]

I understand that it will not go away... i understand this all too clearly. I have been dealing with this for forever...
<br />
<br />Just wondering if anyone else had any experience with needing sinus reconstruction or having sinus deterioration. This part of sinus issues is a new road for me. The surgeries, infections and pain are not new to me. I should clarify... the sinus is not completely missing... it is there but blocked likely by scar tissue or the abscess.
<br />
<br />I was just curious to know if there was anyone else out there with similar sinus deterioration and what their docs have done to help them.

 

[Havoc]

My left frontal is very small and mal-formed, although we aren't to the point of reconstruction yet, I have had to have several revisions. I think I'm on #5 now. I found a really good ENT surgeon, though so I am happy with the results and have no more daily headaches.

 

[Havoc]

My left frontal is very small and mal-formed, although we aren't to the point of reconstruction yet, I have had to have several revisions. I think I'm on #5 now. I found a really good ENT surgeon, though so I am happy with the results and have no more daily headaches.

 

[Havoc]

My left frontal is very small and mal-formed, although we aren't to the point of reconstruction yet, I have had to have several revisions. I think I'm on #5 now. I found a really good ENT surgeon, though so I am happy with the results and have no more daily headaches.

 

[tesorotiffa]

I have never gotten a report from my ENT saying anything about sinus deterioration so I find it interesting to read your post! I have had 3 or 4 sinus surgeries, but only had polyps removed on the first one. Thankfully they have never grown back. My issue seems to be the sinuses getting filled with infection which then infects my lungs.

My CF doc did tell me about one person who had sinus reconstruction and nothing improved for her. I'm not sure what her circumstances were though so I'm not trying to scare you!!

 

[tesorotiffa]

I have never gotten a report from my ENT saying anything about sinus deterioration so I find it interesting to read your post! I have had 3 or 4 sinus surgeries, but only had polyps removed on the first one. Thankfully they have never grown back. My issue seems to be the sinuses getting filled with infection which then infects my lungs.

My CF doc did tell me about one person who had sinus reconstruction and nothing improved for her. I'm not sure what her circumstances were though so I'm not trying to scare you!!