Guest guest Posted November 11, 2006 Report Share Posted November 11, 2006 Hi there, everyone! I was recommended to this group by a very kind member of a Choanal Atrazia list. I joined this group because my husband has Colaboma and Choanal Atrazia. He, from the time he was around 7 years old, has had a constant headache all over his head. He lived in Russia, then Israel before coming to the U.S. 2 years ago when he and I married. The choanal atrazia is only on the right side as is the colaboma. Those are the only charge issues he's got. Just now we're trying to get something done about those headaches. He's went to university, worked and studied with that headache, and it just kills me. He's so strong, and I know I'd have broken by now! All of you having any of these difficulties are so strong@! At any rate...I digress. He's being given an extremely low dose of an antidepressant for the headaches, like 10 milligrams. It helps a lot, but ends up making him feel tired and depressed, so acts as a double edged sword. I'd like the headaches fixed so he can just get off the bloody med! For me, when I have a sinus headache, it is all over my head like his are, so I'm guessing it is about the choanal stuff. Though only his right side is choanal atrazia the left isn't of much more use. He can hardly breathe out of it because of some roll in his nose from sinus infections or some such. ENT is dealing with us slowly, and that is about to drive me nuts as well. I'm not sure if opening just the left side with the infection will be enough or if they need to reconstruct thee right one with the choanal atrazia as well. ENT are stupid and basically let me, a medical massage therapist, tell them what to do. I'm not liking that, as I'm not a bloody doctor! LOL. The first ENT guy we saw didn't think opening the side with the choanal would help. He said that the sinus isn't blocked. He said it simply doesn't exist and so wouldn't be causing pain. Well the right side of his nose is tender, so I'm wondering how much of that is true. I'd like to just have the left side with no choanal unblocked so he'll have to have less of a drastic operation, but if the ENT is full of it, which they have been before, it won't help. So he may have to get the whole thing done just to be safe if I'm having to decide. *sighs* As the side with the choanal will basically have to have a sinus created for it, they said it'll be basic plastic surgery. I'm just worried about complications and a lot more pain if it's not necessary. If any of you have any suggestions or advice, I'm always open to listening, and is one big reason I'm here. Yahoo groups are such a great thing! Finding others with similar issues is just...well nice. Thanks all for listening to my long rant. My messages aren't usually so long. *smiles and hugs* Sem Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 welcome i dotn have the coanal i allways get the spelling mixed up maybe coz i dotn have it LOL but many chargers do but i do know there is a really godo dr in the us who does this kkind of stuff im in aus but i know coz i read here lol hugs ellen a charger > > Hi there, everyone! I was recommended to this group by a very kind > member of a Choanal Atrazia list. I joined this group because my husband has > Colaboma and Choanal Atrazia. > He, from the time he was around 7 years old, has had a constant headache > all over his head. He lived in Russia, then Israel before coming to the > U.S. 2 years ago when he and I married. > The choanal atrazia is only on the right side as is the colaboma. Those > are the only charge issues he's got. > Just now we're trying to get something done about those headaches. He's > went to university, worked and studied with that headache, and it just kills > me. He's so strong, and I know I'd have broken by now! All of you having any > of these difficulties are so strong@! > At any rate...I digress. > He's being given an extremely low dose of an antidepressant for the > headaches, like 10 milligrams. It helps a lot, but ends up making him feel > tired and depressed, so acts as a double edged sword. > I'd like the headaches fixed so he can just get off the bloody med! For > me, when I have a sinus headache, it is all over my head like his are, so > I'm guessing it is about the choanal stuff. Though only his right side is > choanal atrazia the left isn't of much more use. He can hardly breathe out > of it because of some roll in his nose from sinus infections or some such. > ENT is dealing with us slowly, and that is about to drive me nuts as well. > I'm not sure if opening just the left side with the infection will be > enough or if they need to reconstruct thee right one with the choanal > atrazia as well. > ENT are stupid and basically let me, a medical massage therapist, tell > them what to do. I'm not liking that, as I'm not a bloody doctor! LOL. > The first ENT guy we saw didn't think opening the side with the choanal > would help. He said that the sinus isn't blocked. He said it simply doesn't > exist and so wouldn't be causing pain. Well the right side of his nose is > tender, so I'm wondering how much of that is true. I'd like to just have the > left side with no choanal unblocked so he'll have to have less of a drastic > operation, but if the ENT is full of it, which they have been before, it > won't help. So he may have to get the whole thing done just to be safe if > I'm having to decide. *sighs* > As the side with the choanal will basically have to have a sinus created > for it, they said it'll be basic plastic surgery. I'm just worried about > complications and a lot more pain if it's not necessary. > If any of you have any suggestions or advice, I'm always open to > listening, and is one big reason I'm here. Yahoo groups are such a great > thing! Finding others with similar issues is just...well nice. > Thanks all for listening to my long rant. My messages aren't usually so > long. > *smiles and hugs* > Sem > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 Sen, Welcome to the CHARGE list; my daughter had bilateral bony choanal atresia and we've gone through about 7 surgeries now to get it to stay open. She has tons of green, thick secretions constantly, which we manage with a " sinusrinse " bottle we got from NeilMed. Even though one passage is very narrow, this rinse blows it right out of there. I'm sure it must be very painful for your husband as I'm sure it must be for Kennedy, but that's all she knows. For information on the Sinus Rinse, you can visit http://neilmed.com/ - I hope your hubby gets some answers soon and some relief (and no, I don't work for Neil Med ha ha ha) http://www.chargesyndrome.info > > Hi there, everyone! I was recommended to this group by a very kind > member of a Choanal Atrazia list. I joined this group because my husband has > Colaboma and Choanal Atrazia. > He, from the time he was around 7 years old, has had a constant headache > all over his head. He lived in Russia, then Israel before coming to the > U.S. 2 years ago when he and I married. > The choanal atrazia is only on the right side as is the colaboma. Those > are the only charge issues he's got. > Just now we're trying to get something done about those headaches. He's > went to university, worked and studied with that headache, and it just kills > me. He's so strong, and I know I'd have broken by now! All of you having any > of these difficulties are so strong@! > At any rate...I digress. > He's being given an extremely low dose of an antidepressant for the > headaches, like 10 milligrams. It helps a lot, but ends up making him feel > tired and depressed, so acts as a double edged sword. > I'd like the headaches fixed so he can just get off the bloody med! For > me, when I have a sinus headache, it is all over my head like his are, so > I'm guessing it is about the choanal stuff. Though only his right side is > choanal atrazia the left isn't of much more use. He can hardly breathe out > of it because of some roll in his nose from sinus infections or some such. > ENT is dealing with us slowly, and that is about to drive me nuts as well. > I'm not sure if opening just the left side with the infection will be > enough or if they need to reconstruct thee right one with the choanal > atrazia as well. > ENT are stupid and basically let me, a medical massage therapist, tell > them what to do. I'm not liking that, as I'm not a bloody doctor! LOL. > The first ENT guy we saw didn't think opening the side with the choanal > would help. He said that the sinus isn't blocked. He said it simply doesn't > exist and so wouldn't be causing pain. Well the right side of his nose is > tender, so I'm wondering how much of that is true. I'd like to just have the > left side with no choanal unblocked so he'll have to have less of a drastic > operation, but if the ENT is full of it, which they have been before, it > won't help. So he may have to get the whole thing done just to be safe if > I'm having to decide. *sighs* > As the side with the choanal will basically have to have a sinus created > for it, they said it'll be basic plastic surgery. I'm just worried about > complications and a lot more pain if it's not necessary. > If any of you have any suggestions or advice, I'm always open to > listening, and is one big reason I'm here. Yahoo groups are such a great > thing! Finding others with similar issues is just...well nice. > Thanks all for listening to my long rant. My messages aren't usually so > long. > *smiles and hugs* > Sem > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 Welcome and I hope we can help you and your husband and I know there are some great people here with alot of answers. good luck, Crystal mom to (10), (3), and Eva (19 month old CHARGEr) wife to Dan in Illinois > > Hi there, everyone! I was recommended to this group by a very kind member of a Choanal Atrazia list. I joined this group because my husband has Colaboma and Choanal Atrazia. > He, from the time he was around 7 years old, has had a constant headache all over his head. He lived in Russia, then Israel before coming to the U.S. 2 years ago when he and I married. > The choanal atrazia is only on the right side as is the colaboma. Those are the only charge issues he's got. > Just now we're trying to get something done about those headaches. He's went to university, worked and studied with that headache, and it just kills me. He's so strong, and I know I'd have broken by now! All of you having any of these difficulties are so strong@! > At any rate...I digress. > He's being given an extremely low dose of an antidepressant for the headaches, like 10 milligrams. It helps a lot, but ends up making him feel tired and depressed, so acts as a double edged sword. > I'd like the headaches fixed so he can just get off the bloody med! For me, when I have a sinus headache, it is all over my head like his are, so I'm guessing it is about the choanal stuff. Though only his right side is choanal atrazia the left isn't of much more use. He can hardly breathe out of it because of some roll in his nose from sinus infections or some such. ENT is dealing with us slowly, and that is about to drive me nuts as well. > I'm not sure if opening just the left side with the infection will be enough or if they need to reconstruct thee right one with the choanal atrazia as well. > ENT are stupid and basically let me, a medical massage therapist, tell them what to do. I'm not liking that, as I'm not a bloody doctor! LOL. > The first ENT guy we saw didn't think opening the side with the choanal would help. He said that the sinus isn't blocked. He said it simply doesn't exist and so wouldn't be causing pain. Well the right side of his nose is tender, so I'm wondering how much of that is true. I'd like to just have the left side with no choanal unblocked so he'll have to have less of a drastic operation, but if the ENT is full of it, which they have been before, it won't help. So he may have to get the whole thing done just to be safe if I'm having to decide. *sighs* > As the side with the choanal will basically have to have a sinus created for it, they said it'll be basic plastic surgery. I'm just worried about complications and a lot more pain if it's not necessary. > If any of you have any suggestions or advice, I'm always open to listening, and is one big reason I'm here. Yahoo groups are such a great thing! Finding others with similar issues is just...well nice. > Thanks all for listening to my long rant. My messages aren't usually so long. > *smiles and hugs* > Sem > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2006 Report Share Posted November 13, 2006 Dear Sem, Although the choanal atresia may certainly be the cause of his headaches, I wonder if he has had an MRI of his brain and brainstem, to rule out other possible causes before you enter into any surgery. Also, I would suggest that you find the largest, and most esteemed hospital you can to have the tests done. He certainly deserves the chance to feel better. What a shame that he has had to struggle his whole life with this pain. Best of luck, in Ma. (daughter, , 21 yrs old) > > Hi there, everyone! I was recommended to this group by a very kind member of a Choanal Atrazia list. I joined this group because my husband has Colaboma and Choanal Atrazia. > He, from the time he was around 7 years old, has had a constant headache all over his head. He lived in Russia, then Israel before coming to the U.S. 2 years ago when he and I married. > The choanal atrazia is only on the right side as is the colaboma. Those are the only charge issues he's got. > Just now we're trying to get something done about those headaches. He's went to university, worked and studied with that headache, and it just kills me. He's so strong, and I know I'd have broken by now! All of you having any of these difficulties are so strong@! > At any rate...I digress. > He's being given an extremely low dose of an antidepressant for the headaches, like 10 milligrams. It helps a lot, but ends up making him feel tired and depressed, so acts as a double edged sword. > I'd like the headaches fixed so he can just get off the bloody med! For me, when I have a sinus headache, it is all over my head like his are, so I'm guessing it is about the choanal stuff. Though only his right side is choanal atrazia the left isn't of much more use. He can hardly breathe out of it because of some roll in his nose from sinus infections or some such. ENT is dealing with us slowly, and that is about to drive me nuts as well. > I'm not sure if opening just the left side with the infection will be enough or if they need to reconstruct thee right one with the choanal atrazia as well. > ENT are stupid and basically let me, a medical massage therapist, tell them what to do. I'm not liking that, as I'm not a bloody doctor! LOL. > The first ENT guy we saw didn't think opening the side with the choanal would help. He said that the sinus isn't blocked. He said it simply doesn't exist and so wouldn't be causing pain. Well the right side of his nose is tender, so I'm wondering how much of that is true. I'd like to just have the left side with no choanal unblocked so he'll have to have less of a drastic operation, but if the ENT is full of it, which they have been before, it won't help. So he may have to get the whole thing done just to be safe if I'm having to decide. *sighs* > As the side with the choanal will basically have to have a sinus created for it, they said it'll be basic plastic surgery. I'm just worried about complications and a lot more pain if it's not necessary. > If any of you have any suggestions or advice, I'm always open to listening, and is one big reason I'm here. Yahoo groups are such a great thing! Finding others with similar issues is just...well nice. > Thanks all for listening to my long rant. My messages aren't usually so long. > *smiles and hugs* > Sem > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2006 Report Share Posted November 13, 2006 : Hi, and thanks for sharing the info on the rinse. It may help after his operation, but now it is so closed that I'm not sure it would help. I'm showing him the link, though. *hugs* Does your daughter have constant headaches, and did opening the nose help? Sem Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 Hi all, and thanks for the warm welcomes! : I'm not sure where the best hospital in our area is. We're in Riverside CA about an hour from LA. also not sure that I could afford it. LOL. Sad but true. As for an MRI, yes, he's had it, and it is normal for which we're very thankful. Sem Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 Sem, she's never articulated any type of headache but this is all she knows, so it probably seems normal to her. She has copious secretions every day. www.chargesyndrome.info > > : > Hi, and thanks for sharing the info on the rinse. It may help after his > operation, but now it is so closed that I'm not sure it would help. I'm > showing him the link, though. *hugs* Does your daughter have constant > headaches, and did opening the nose help? > Sem > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2006 Report Share Posted November 14, 2006 : I'm so sorry for your daughter, and for my husband as well. *sighs* And most doctors don't know much about it or so it seems. At any rate Ishamael, my husband, doesn't have a lot of infections. I think he had most of those as a child. I ordered the rinse a few minutes ago and am eager for him to try it. *hugs* Sem Quote Link to comment Share on other sites More sharing options...
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