bone loss

[jennycurrie]

Abby is 6 and we just had surgery #15, all of which has been in the last 2 years.  She gets really bad sinus polyps.  We were having a surgery every 3 months for awhile because she kept getting them so bad that they would completely close her nasal passages up.  Other than that she stays pretty healthy.  2 years ago she was having her 3rd or 4th sinus polyp surgery and the doctor came out and told us that there was a problem and that she uncovered some bone loss between the eyes and the nasal cavity so she had an eye doctor step in to the surgery to have a look.  Well turns out her eyes fell back into her nasal cavity and they had to put plastic pieces in to pull them back out.  Absolute nightmare!  2 years later we are trying to fix her eyes because her right eye has lost movement due to a muscle tearing off in the jagged bone that was left(before they did the surgery to implant the plastic pieces)so the eye is turned outward and she has double vision.  Well the same surgeon who put the plastic pieces in 2 years ago assisted in this surgery to straighten her eyes by now putting in a titanium plate to suture her eye to so it would stay in the forward position.  He came out and told us that the procedure went well however there was more bone loss above the plastic pieces and so there was now an open gap again.  He thought that the scar tissue would build a lining where it was not completely open in about a month.  He does not seem to be concerned about it, but no one can tell me why she is still loosing bone or what we should do.  I am scared of it eating the bone between the sinus cavity and the brain as well.  Has anyone else had anything similar happen?

 

[jennycurrie]

Abby is 6 and we just had surgery #15, all of which has been in the last 2 years. She gets really bad sinus polyps. We were having a surgery every 3 months for awhile because she kept getting them so bad that they would completely close her nasal passages up. Other than that she stays pretty healthy. 2 years ago she was having her 3rd or 4th sinus polyp surgery and the doctor came out and told us that there was a problem and that she uncovered some bone loss between the eyes and the nasal cavity so she had an eye doctor step in to the surgery to have a look. Well turns out her eyes fell back into her nasal cavity and they had to put plastic pieces in to pull them back out. Absolute nightmare! 2 years later we are trying to fix her eyes because her right eye has lost movement due to a muscle tearing off in the jagged bone that was left(before they did the surgery to implant the plastic pieces)so the eye is turned outward and she has double vision. Well the same surgeon who put the plastic pieces in 2 years ago assisted in this surgery to straighten her eyes by now putting in a titanium plate to suture her eye to so it would stay in the forward position. He came out and told us that the procedure went well however there was more bone loss above the plastic pieces and so there was now an open gap again. He thought that the scar tissue would build a lining where it was not completely open in about a month. He does not seem to be concerned about it, but no one can tell me why she is still loosing bone or what we should do. I am scared of it eating the bone between the sinus cavity and the brain as well. Has anyone else had anything similar happen?

 

[jennycurrie]

Abby is 6 and we just had surgery #15, all of which has been in the last 2 years. She gets really bad sinus polyps. We were having a surgery every 3 months for awhile because she kept getting them so bad that they would completely close her nasal passages up. Other than that she stays pretty healthy. 2 years ago she was having her 3rd or 4th sinus polyp surgery and the doctor came out and told us that there was a problem and that she uncovered some bone loss between the eyes and the nasal cavity so she had an eye doctor step in to the surgery to have a look. Well turns out her eyes fell back into her nasal cavity and they had to put plastic pieces in to pull them back out. Absolute nightmare! 2 years later we are trying to fix her eyes because her right eye has lost movement due to a muscle tearing off in the jagged bone that was left(before they did the surgery to implant the plastic pieces)so the eye is turned outward and she has double vision. Well the same surgeon who put the plastic pieces in 2 years ago assisted in this surgery to straighten her eyes by now putting in a titanium plate to suture her eye to so it would stay in the forward position. He came out and told us that the procedure went well however there was more bone loss above the plastic pieces and so there was now an open gap again. He thought that the scar tissue would build a lining where it was not completely open in about a month. He does not seem to be concerned about it, but no one can tell me why she is still loosing bone or what we should do. I am scared of it eating the bone between the sinus cavity and the brain as well. Has anyone else had anything similar happen?<BR>

 

[mneville]

I feel your pain. Aidan started sinus surgeries at age 1 when he could no longer eat, sleep or practically breathe. Since then, they've constantly been a problem and are getting worse. During his first surgery, the infection was so bad that he did lose one between his nose. He is having his 10th sinus surgery next week and lives on oral antibiotics, IVs and Aleeve between surgeries. It's horrible. His frontal sinuses are also affected and he has horrid headaches. I am at my wits' end!
Megan

 

[mneville]

I feel your pain. Aidan started sinus surgeries at age 1 when he could no longer eat, sleep or practically breathe. Since then, they've constantly been a problem and are getting worse. During his first surgery, the infection was so bad that he did lose one between his nose. He is having his 10th sinus surgery next week and lives on oral antibiotics, IVs and Aleeve between surgeries. It's horrible. His frontal sinuses are also affected and he has horrid headaches. I am at my wits' end!
Megan

 

[mneville]

I feel your pain. Aidan started sinus surgeries at age 1 when he could no longer eat, sleep or practically breathe. Since then, they've constantly been a problem and are getting worse. During his first surgery, the infection was so bad that he did lose one between his nose. He is having his 10th sinus surgery next week and lives on oral antibiotics, IVs and Aleeve between surgeries. It's horrible. His frontal sinuses are also affected and he has horrid headaches. I am at my wits' end!
<br />Megan

 

[livinglovinggrace]

Hi Jenny
Firstly can i say how miserable and unfair this all is for your little. CF truly sucks! As a teen I had bad (not as bad as you describe however) sinus issues. It began to effect my school work because i would get headaches and could put my head down to study for any reasonable period of time. In my late teens i started Hypertonic saline, until this point i hadnt tolerated it but though it was tough to start with my body eventually got used to it! I now have a rather intensive hts reigime (drs sometime raise their eyebrows at how much i do!) BUT i havent had sinus surgery since! It works for both my lungs and sinus! Yay! Anyway, that wasnt your question!

In regard to the bone loss, i was wondering if your daughter uses steriodal based sprays regularly? Rhinocourt or similar? It is my understanding that this can be a side effect of these though I would have thought your little one would not have used them long enough. I have a non-cf family member whom this has happened to but he used such sprays for many many years.

Sorry for the long reply, i hope you find some answers to keep your little one well. Best of luck.

 

[livinglovinggrace]

Hi Jenny
Firstly can i say how miserable and unfair this all is for your little. CF truly sucks! As a teen I had bad (not as bad as you describe however) sinus issues. It began to effect my school work because i would get headaches and could put my head down to study for any reasonable period of time. In my late teens i started Hypertonic saline, until this point i hadnt tolerated it but though it was tough to start with my body eventually got used to it! I now have a rather intensive hts reigime (drs sometime raise their eyebrows at how much i do!) BUT i havent had sinus surgery since! It works for both my lungs and sinus! Yay! Anyway, that wasnt your question!

In regard to the bone loss, i was wondering if your daughter uses steriodal based sprays regularly? Rhinocourt or similar? It is my understanding that this can be a side effect of these though I would have thought your little one would not have used them long enough. I have a non-cf family member whom this has happened to but he used such sprays for many many years.

Sorry for the long reply, i hope you find some answers to keep your little one well. Best of luck.

 

[livinglovinggrace]

Hi Jenny
<br />Firstly can i say how miserable and unfair this all is for your little. CF truly sucks! As a teen I had bad (not as bad as you describe however) sinus issues. It began to effect my school work because i would get headaches and could put my head down to study for any reasonable period of time. In my late teens i started Hypertonic saline, until this point i hadnt tolerated it but though it was tough to start with my body eventually got used to it! I now have a rather intensive hts reigime (drs sometime raise their eyebrows at how much i do!) BUT i havent had sinus surgery since! It works for both my lungs and sinus! Yay! Anyway, that wasnt your question!
<br />
<br />In regard to the bone loss, i was wondering if your daughter uses steriodal based sprays regularly? Rhinocourt or similar? It is my understanding that this can be a side effect of these though I would have thought your little one would not have used them long enough. I have a non-cf family member whom this has happened to but he used such sprays for many many years.
<br />
<br />Sorry for the long reply, i hope you find some answers to keep your little one well. Best of luck.

 

[JENNYC]

Thank you both so much for your responses. I was beginning to think that Abby was the only one. It makes me sad to think that she might have problems with her school work because of it. She has started taking a steroid spray (Veramyst) but that was after the first bone loss. I know her situation sounds bad, and it is but you would never know it, she is the happiest little girl you'll ever meet. She thinks surgery is going to play in the playroom and then going to sleep in mommies lap with a horrible tasting and feeling gas and then waking up with mommy and daddy there to give her a popsicle so we can go home. She has a very very high pain tolerance and she rarely ever complains. But like you said she has just here recently started complaining of headaches, and as I said she NEVER complains. I will definately ask her ENT about the nasal spray. We are building a new home and putting in a whole house HEPA filter system with a UV light in the ducts to try to stop her sinus polyps, we are also doing the spray foam as it is suppose to stop allergens from entering so freely. I pray with all I have that this helps her.

Like I said thank you so much for responding. It makes me feel so much better knowing that it is not just Abby that has this horrible problem to deal with.

---------------------------------------
Mom to Abby 6 w/cf, and Clayton 9 w/o cf

 

[JENNYC]

Thank you both so much for your responses. I was beginning to think that Abby was the only one. It makes me sad to think that she might have problems with her school work because of it. She has started taking a steroid spray (Veramyst) but that was after the first bone loss. I know her situation sounds bad, and it is but you would never know it, she is the happiest little girl you'll ever meet. She thinks surgery is going to play in the playroom and then going to sleep in mommies lap with a horrible tasting and feeling gas and then waking up with mommy and daddy there to give her a popsicle so we can go home. She has a very very high pain tolerance and she rarely ever complains. But like you said she has just here recently started complaining of headaches, and as I said she NEVER complains. I will definately ask her ENT about the nasal spray. We are building a new home and putting in a whole house HEPA filter system with a UV light in the ducts to try to stop her sinus polyps, we are also doing the spray foam as it is suppose to stop allergens from entering so freely. I pray with all I have that this helps her.

Like I said thank you so much for responding. It makes me feel so much better knowing that it is not just Abby that has this horrible problem to deal with.

---------------------------------------
Mom to Abby 6 w/cf, and Clayton 9 w/o cf

 

[JENNYC]

Thank you both so much for your responses. I was beginning to think that Abby was the only one. It makes me sad to think that she might have problems with her school work because of it. She has started taking a steroid spray (Veramyst) but that was after the first bone loss. I know her situation sounds bad, and it is but you would never know it, she is the happiest little girl you'll ever meet. She thinks surgery is going to play in the playroom and then going to sleep in mommies lap with a horrible tasting and feeling gas and then waking up with mommy and daddy there to give her a popsicle so we can go home. She has a very very high pain tolerance and she rarely ever complains. But like you said she has just here recently started complaining of headaches, and as I said she NEVER complains. I will definately ask her ENT about the nasal spray. We are building a new home and putting in a whole house HEPA filter system with a UV light in the ducts to try to stop her sinus polyps, we are also doing the spray foam as it is suppose to stop allergens from entering so freely. I pray with all I have that this helps her.
<br />
<br />Like I said thank you so much for responding. It makes me feel so much better knowing that it is not just Abby that has this horrible problem to deal with.
<br />
<br />---------------------------------------
<br />Mom to Abby 6 w/cf, and Clayton 9 w/o cf