This is for parents, like us, of children with branchial cleft cysts, sinuses, or fistulas. When I researched my daughter's condition, I couldn't find anything written in laymen's terms which described the diagnosis and surgery on a baby or small child. Please consider this blog as one family's experience--information presented here is not guaranteed to be medically accurate or take the place of a good ENT specialist!
My baby is 15 mo. and is having to have his branchial cleft cyst removed...we are nervous b/c our doc referred us to an ENT surgeon, who after reviewing the scan has referred us to another surgeon...I feel like there is not a lot of these done in Spokane, WA...it was good to come across a blog with a success story! ~Jennifer
Hi Jennifer, Not sure if you'll see this or not but I hope so! I live in Sandpoint, ID and my 22 month old has what we believe to be a branchial cleft cyst. In reading more about it online I stumbled upon this blog and read your comment about living in Spokane! I would love to talk more about your experience, doctors you saw and the outcome. Thanks!
My son had the surgery 13 years ago at Riley Childrens Hospital in Indianapolis when he was maybe 16 months old. His scar is almost non existent. Back then we didn't have the Internet to research the surgery. I'm glad to see that there are resources now for mothers like me that had no idea what to expect.
thank u for ur blog..i m the same way crazy mommy (as my husband said),but still...we have the same problem(((rhight now i saw that some reddish pus coming out from the hole on neck.in 4 weeks we will have a surgery but for now i m wondering,maybe it s abscess and we need to use antibiotics..what u thing?how that was in ur case?
The discharge from Kate's neck was always like a mucus color and would dry to a crusty booger consistency (so gross! sorry), never red. I think if the discharge has changed you should see your ENT doctor right away. An infection of the branchial cleft sinus or cyst can be very dangerous and impede their ability to breathe. This is the reason they are removed, to decrease the chance of infection as they age (I was told they will almost certainly get infected by the time they are teens if it is not removed, and as a teeenager/adult the scars from the surgery when infected are much larger.)
Hi Kelly, Thank you so much for writing this blog! I noticed my daughter had a leaking pore in her neck at around 1year old. Her doctor told me it was a branchial cleft cyst and not to be concerned unless it gets infected. Now she is 6 yrs old and I noticed puss leaking from it while she had a sinus infection. Her doctor referred us to a pediatric e.n.t. My daughter Kianna will be seeing the doctor in two days. I am worried! I talked to my uncle who is an e.n.t. doctor in another state and he said without looking at her, it sounds like she has a fistula and not a cyst. He said this will probably mean surgery. I'm not sure how to find an experienced doctor in MN. My cousin has this abnormality and has not removed it, she is 33 and it hasn't become infected. She said she grew up embarrassed by it and worried people would see it leaking. Do you have any advice/comfort for me? I would so appreciate it! I am praying the doctors have wisdom and that my baby girl will be okay. Thanks, Rachel
I know, it's a really hard call. It's interesting your cousin has one too--they run in families, and my brother has one. He's 32 and has had no problems. It's tough, there are some risks (cutting tongue nerve the biggest) but if it gets infected down the road, that's a HUGE dangerous surgery and 3 huge scars on her neck. The scarring on a 6 year old will still be highly visible, and I think if i were you I'd request it be closed by a plastic surgeon (I wish I would have done that). that said, the younger they are the smaller the cuts and the more pliable the skin, so if you ever will do it the time is now. I remain glad we did ours and are now done with it.
As for finding someone in Minnesota, I would start at Mayo in their pediatric ENT. This is a rare condition and very few docs deal with it. There should be someone there that knows about it, and they should do at least 2 or 3 of these a year. if you can't find a doc that has done these at least a few times a year, go elsewhere! they are opening your child's neck and if done improperly, it could result in having to have it redone or worse, cutting her tongue nerve. MAKE SURE your surgeon is as experienced as you can expect with something so rare. It's really only a two night hospital stay so if you had to fly in to Univ. of Michigan to go my doctor, I wuold do it. Or there is a good ENT in Texas, I can't recall his name but I think it's on my website, he is on many of the studies about this abnormality, try him. But find someone who is familiar with this condition...
Thanks so much for helping me!!! I have found one other 'story' after reading your blog. A teenager describes how she went to 9 doctors before she found Dr. Tibesar in Minneapolis. He is a pediatric e.n.t. and does plastic surgery. He was the first to be able to correctly diagnose this girl and successfully did her surgery. (She had a very large branchial cleft cyst close to nerves). I think tomorrow I will ask to be referred to him after I see the pediatric doctor in my area. If I'm not satisfied with any doctor in my state, then my grandmother would love to have me over since she lives in Ann Arbor, MI!! Your input is very helpful!!! I am really glad that you pointed out that the surgens should do at least 3 of these surgeries a year. I will post back when we have chosen a doctor. - Rachel
Hi Kelly, How's your daughter now? Is there any post surgery infection or still got pus coming out or something? My 2 years old son just been diagnosed with this and we have surgery coming in few weeks! I'm so worried and scared if the surgery will make it worse. He been healthy boy so far. Hope you could share how your daughter condition now and hope that will calm me a bit. Thanks kelly
My daughter is 2.5 years post-surgery and no problems! I will try to post an update picture of the scars--they have really faded and i'm sure by the time she cares, they will be very hard to see. If your surgery is done by someone very competent, they should get the whole tract and not have reoccurances of the fistula/cyst. If they are not well-trained or experienced, they may close it improperly (cauterize) or not get the whole thing and it would come back. MAKE SURE you get a pediatric ENT surgeon who does these as often as possible considering how rare they are. I would travel quite far to find this person if I had to, it's that important. good luck!
Hi. What a great, informative blog. It really helped me as a very concerned parent. Our baby is 24 hrs old and we are still in the hospital. She has a cyst on her neck on the right size about the size of a pencil eraser. I cannot find any hole or leakage on her neck neither did the doctor. Would this be considered a first branchial anomaly? From your blog I understood that a cyst has no openings; however, a first branchial anomaly has an opening. Perhaps I am not understanding properly. What could it be when there is a cyst but no opening? Could it be that the sinus tract has not formed yet and has not reached the exterior of the skin and hence not forming an opening? Thanks
Hi Bart, I'm not even CLOSE to a specialist doctor, so i would advise you to seek the attention of a pediatric ENT as soon as possible. The peds in the hospital when Kate was born thought she might have a thyroid problem when I alerted them to the small pin hole pore opening in her neck. And we were at Univ. of Michigan, not a small rural hospital! So you really need to find an ENT specialist, preferably one that knows about this abnormality. That said, i'm not sure if Branchial Cleft Abnormalities can present as cysts or just fistulas (with one opening). good luck and let us know how your daughter's condition turns out!
Like everyone else has said, THANK YOU for this blog! My almost 5 month old son was born with what looked like a light brown/gray pimple or mole on his lower right side of his neck, almost colarbone line. It's flimsy feeling (if that makes sense!) - but doesn't feel fluid filled - almost looks like a larger skin tag. It's small and we were told to just keep an eye on it, that it could be removed in the future. Never was it mentioned that it could be a branchial cleft cyst. Fast forward to now and under the skin there is now a hard-ish mass about the size of a marble. The outside of the skin hasn't changed but under the skin has. My son also had surgery at 3 weeks old for pyloric stenosis so our pediatrician recommended we go back to the pediatric surgeon for a consult. He knew what it was right away but due to my son being so little, he wants to wait another month until his neck/head is stronger and more defined to do another examination and schedule surgery from there. By just looking at it, he's pretty sure it's the fourth type, which he admitted was very rare. He has only done one of these surgeries and said if it indeed was the fourth type, he would want his colleauge to join him in the operating room. He's a wonderful surgeon (we can barely see the scars from our sons pyloric stenosis surgery!) and we are impressed with his honesty and knowledge. We live about 40 minutes outside New York City and travel to the Maria Ferari Childrens Hospital at Westchester Medical Center for the surgeon - 150% worth the almost hour drive. We have not seen a pedatric ENT, but will inquire...however, we feel confident that the surgeon knows what he's talking about. Because the hospital is a teaching hospital and university, our surgeon has also taught his med students about branchial cleft cysts and will be showing us his lecture videos at our next visit, lol. I'll admit it...I'm scared if it is the fourth type. The internet can do a really good job at scaring you too! I try to take everything lightly...but it's hard sometimes. I know it's the right thing to do, I don't want to "wait and see" like a lot of people do, and it's not what our surgeon has recommended either. Infection is the last thing I want to deal with. My son's does not leak any fluid and is completely closed from the outside. It doesn't seem to be painful but I know infection could cause pain the future. Again - thank you for this! And I'm so glad your daughter is doing great!
Thanks for sharing Emily! So glad this helped you a bit! Be sure to come back and let us know how things turned out--if you read my post about the four types of abnormalities, you'll see that skin tags are sometimes seen in the 2nd type...which makes me think that's probably what yours will end up being. We'll keep our fingers crossed for a nice, uncomplicated case for your son! :)
Hey Kelly. Our 3 year old is about to go through this and we are really quite concerned. I was wondering if I may contact you to share a picture and get your thoughts on some things? If I can, my email address is cameronsmith38@gmail.com Thank you for this blog, it has been incredibly helpful!
Thank you for this blog. I'm 22 and everytime I had a throat infection in my childhood my 'right gland' would swell up and then disappear again with antibiotics. However, this year the unsightly lump has stayed put even when I have been perfectly healthy! It wasn't until the week before my graduation I noticed how bad my neck looked in a photograph. A doctors appointment and an ultra sound later, I've been told I need to see an ENT specialist to maybe get the branchial cleft cyst out! So good to have a diagnosis finally, and thank you for putting it all in layman's terms because everything else online is useless for someone with no medical background (like me). :)
Thank you for this blog! It is really helpful. I've been googling like crazy and everything that shows up is all medical mumbo-jumbo. I wanted to hear stories of people's experiences and this has been awesome. When my daughter was born, I noticed an area on her neck that looked like two little bumps side by side. They are hard little lumps. I asked her pediatrician at her post hospital follow up and she didn't seem all that concerned but said I could have an ultrasound done. I honestly don't think she knew what to think of it so she just blew it off. I went and got her the ultrasound at 8 days old and even still her pediatrician kind of blew it off as no big deal. I decided to take her to an excellent pediatric ENT in our area. He said he's seen and handled several of these cases. He did follow up appointments with her every 6 months. At her 18 month appointment, he mentioned possibly doing the surgery. He kind of left it up to be my decision and didn't favor one way or the other. After a long agonizing conversation with my husband, we decided to have it removed. Her surgery is in 3 weeks and I'm terrified. He's doing her procedure as an outpatient basis, so she's coming home with us that night. I hope I'm making the right decision for her. Anyways, is there anything you recommend that we can do to make her comfortable and to help her through this surgery? Any advice?
Thank you! I love hearing from parents who found us helpful--that was always my intent, because I couldn't find anything like this out there when I was furiously Googling as well. ;)
For her surgery, I would say earlier is better, to an extent (I wouldn't want to do this on a newborn or infant). Throat surgeries are tough on anyone but it gets harder (recovery wise) the bigger you are. So doing it at 2 years old is probably perfect (ours was 18 months) For her peace of mind (and yours), I would say ask if you (or her Dad) can carry her back into the operation room; they do this often at Children's hospitals but regular ORs are not as comfortable with it, so you might need to badger them and expect to wear scrubs. It saves you and her from a dramatic arm-ripping scene in the pre-op room like they are kidnapping your child (you're already stressed enough) and keeps her (and parents) calmer going in. After, i would say expect lots of cuddles and sleeping, and follow whatever measures your ENT suggests (popsicles are a great one!) Ask for heavy flavoring on the antibiotics and Tylenol 3, or at least an option that is edible in case the antibiotic they give you is one of the strong ones they literally won't gag down. Back up plans are good when it's 3 in the morning and she won't take the meds. Good luck and let us know how it goes!
My son is ten months old and will be having removal surgery this week. I'm scared because I haven't been able to find any information on surgery on an infant. Have you heard of any?
Hello. My 11 month old was diagnosed with branchial cleft cyst. How did your surgery go? We are worried and would love to wait if possible. But most likely we will have to operate sooner. I would appreciate if you share your story
My daughter was 18 months, but she's a very small kid so was probably the size of some 12 month olds! I'm sure 10 months is fine, I think our doctor said anytime after 6 months and we waited a year. Good luck to you!
Hi Kelly. I have a 3.5 month old son. He was born with a small indentation on his lower neck (docs all gave the "baby acne is normal" excuse) but it never went away. I've kept my eye on it since day 1 and noticed that if I pull the skin tight around it, it looks like a small red pimple, then if I gently squeeze the area a clear, mildly sticky fluid comes out... I haven't yet brought him to a doc about it because I finally starting doing the online research tonight and ran across your blog. I'm so scared that this is what he has. Im only 22, just got married April 2012, had my son May 2013... I just feel like the past year has been a blur already and now THIS is a potential threat. But I would like you to know that ready through all of your posts is helping me catch my breath and stop panicking quite as much. I'm crossing my fingers that he doesn't have this, but I think it's pretty clear to me that he does... I'm really happy to see how amazingly your daughter has recovered, though!
Dear Kelly, My husband had surgery on BCC years ago and has not stopped having sinus drainage since. The doctor said he probably has allergies... Which he must have got over night since he never had this problem before. Right? He has had two ENTs here in Grand Rapids , MI tell him that they feel there is no way that the Dr removed the entire cyst. They feel he left some of it... I remember him telling us that he putted " dissolvable packing into it???" Anyway, I wanted to ask who you may have seen in AnnArbor. My email is Michlindy1@ Gmail.com. Any info would greatly be appreciated as we are so tired of every ENT starting with ... You need to see an Allergist. We feel a nerve is being stimulated somehow causing this constant drainage. His voice has never been the same and he immediately list weight and has a hard time keeping it on... Almost like some nervous system is being affected causing things to speed up... Thus causing sinus drainage as well. Thank you in advance for any info you can shed on this matter.
Hi All, I have come across this while researching for my daughter's Branchial cleft surgery. She was born with a pit near her right neck which looked more like a scratch. When she was 2.5 years In August 2016 this year her 'pit' got infected and we got her removal surgery done on 14 dec 2016, however there is a mole I can see right at the start of her incision scar. Hopefully I get an appointment for tomorrow. In the meanwhile pls help me people, has anyone come across such a thing? Are these just simple stiches or has the pit moved to a different place. Please help!!
My baby is 15 mo. and is having to have his branchial cleft cyst removed...we are nervous b/c our doc referred us to an ENT surgeon, who after reviewing the scan has referred us to another surgeon...I feel like there is not a lot of these done in Spokane, WA...it was good to come across a blog with a success story!
ReplyDelete~Jennifer
Hi Jennifer,
DeleteNot sure if you'll see this or not but I hope so! I live in Sandpoint, ID and my 22 month old has what we believe to be a branchial cleft cyst. In reading more about it online I stumbled upon this blog and read your comment about living in Spokane! I would love to talk more about your experience, doctors you saw and the outcome.
Thanks!
My son had the surgery 13 years ago at Riley Childrens Hospital in Indianapolis when he was maybe 16 months old. His scar is almost non existent. Back then we didn't have the Internet to research the surgery. I'm glad to see that there are resources now for mothers like me that had no idea what to expect.
ReplyDeletethank u for ur blog..i m the same way crazy mommy (as my husband said),but still...we have the same problem(((rhight now i saw that some reddish pus coming out from the hole on neck.in 4 weeks we will have a surgery but for now i m wondering,maybe it s abscess and we need to use antibiotics..what u thing?how that was in ur case?
ReplyDeleteThe discharge from Kate's neck was always like a mucus color and would dry to a crusty booger consistency (so gross! sorry), never red. I think if the discharge has changed you should see your ENT doctor right away. An infection of the branchial cleft sinus or cyst can be very dangerous and impede their ability to breathe. This is the reason they are removed, to decrease the chance of infection as they age (I was told they will almost certainly get infected by the time they are teens if it is not removed, and as a teeenager/adult the scars from the surgery when infected are much larger.)
ReplyDeleteHi Kelly,
ReplyDeleteThank you so much for writing this blog! I noticed my daughter had a leaking pore in her neck at around 1year old. Her doctor told me it was a branchial cleft cyst and not to be concerned unless it gets infected. Now she is 6 yrs old and I noticed puss leaking from it while she had a sinus infection. Her doctor referred us to a pediatric e.n.t. My daughter Kianna will be seeing the doctor in two days. I am worried! I talked to my uncle who is an e.n.t. doctor in another state and he said without looking at her, it sounds like she has a fistula and not a cyst. He said this will probably mean surgery. I'm not sure how to find an experienced doctor in MN. My cousin has this abnormality and has not removed it, she is 33 and it hasn't become infected. She said she grew up embarrassed by it and worried people would see it leaking. Do you have any advice/comfort for me? I would so appreciate it! I am praying the doctors have wisdom and that my baby girl will be okay. Thanks, Rachel
I know, it's a really hard call. It's interesting your cousin has one too--they run in families, and my brother has one. He's 32 and has had no problems. It's tough, there are some risks (cutting tongue nerve the biggest) but if it gets infected down the road, that's a HUGE dangerous surgery and 3 huge scars on her neck. The scarring on a 6 year old will still be highly visible, and I think if i were you I'd request it be closed by a plastic surgeon (I wish I would have done that). that said, the younger they are the smaller the cuts and the more pliable the skin, so if you ever will do it the time is now. I remain glad we did ours and are now done with it.
ReplyDeleteAs for finding someone in Minnesota, I would start at Mayo in their pediatric ENT. This is a rare condition and very few docs deal with it. There should be someone there that knows about it, and they should do at least 2 or 3 of these a year. if you can't find a doc that has done these at least a few times a year, go elsewhere! they are opening your child's neck and if done improperly, it could result in having to have it redone or worse, cutting her tongue nerve. MAKE SURE your surgeon is as experienced as you can expect with something so rare. It's really only a two night hospital stay so if you had to fly in to Univ. of Michigan to go my doctor, I wuold do it. Or there is a good ENT in Texas, I can't recall his name but I think it's on my website, he is on many of the studies about this abnormality, try him. But find someone who is familiar with this condition...
Good luck!
Thanks so much for helping me!!! I have found one other 'story' after reading your blog. A teenager describes how she went to 9 doctors before she found Dr. Tibesar in Minneapolis. He is a pediatric e.n.t. and does plastic surgery. He was the first to be able to correctly diagnose this girl and successfully did her surgery. (She had a very large branchial cleft cyst close to nerves). I think tomorrow I will ask to be referred to him after I see the pediatric doctor in my area. If I'm not satisfied with any doctor in my state, then my grandmother would love to have me over since she lives in Ann Arbor, MI!! Your input is very helpful!!! I am really glad that you pointed out that the surgens should do at least 3 of these surgeries a year. I will post back when we have chosen a doctor. - Rachel
ReplyDeleteHi Kelly,
ReplyDeleteHow's your daughter now? Is there any post surgery infection or still got pus coming out or something? My 2 years old son just been diagnosed with this and we have surgery coming in few weeks! I'm so worried and scared if the surgery will make it worse. He been healthy boy so far. Hope you could share how your daughter condition now and hope that will calm me a bit.
Thanks kelly
My daughter is 2.5 years post-surgery and no problems! I will try to post an update picture of the scars--they have really faded and i'm sure by the time she cares, they will be very hard to see. If your surgery is done by someone very competent, they should get the whole tract and not have reoccurances of the fistula/cyst. If they are not well-trained or experienced, they may close it improperly (cauterize) or not get the whole thing and it would come back. MAKE SURE you get a pediatric ENT surgeon who does these as often as possible considering how rare they are. I would travel quite far to find this person if I had to, it's that important. good luck!
ReplyDeleteHi. What a great, informative blog. It really helped me as a very concerned parent. Our baby is 24 hrs old and we are still in the hospital. She has a cyst on her neck on the right size about the size of a pencil eraser. I cannot find any hole or leakage on her neck neither did the doctor. Would this be considered a first branchial anomaly? From your blog I understood that a cyst has no openings; however, a first branchial anomaly has an opening. Perhaps I am not understanding properly. What could it be when there is a cyst but no opening? Could it be that the sinus tract has not formed yet and has not reached the exterior of the skin and hence not forming an opening? Thanks
ReplyDeleteHi Bart,
ReplyDeleteI'm not even CLOSE to a specialist doctor, so i would advise you to seek the attention of a pediatric ENT as soon as possible. The peds in the hospital when Kate was born thought she might have a thyroid problem when I alerted them to the small pin hole pore opening in her neck. And we were at Univ. of Michigan, not a small rural hospital! So you really need to find an ENT specialist, preferably one that knows about this abnormality. That said, i'm not sure if Branchial Cleft Abnormalities can present as cysts or just fistulas (with one opening). good luck and let us know how your daughter's condition turns out!
Like everyone else has said, THANK YOU for this blog! My almost 5 month old son was born with what looked like a light brown/gray pimple or mole on his lower right side of his neck, almost colarbone line. It's flimsy feeling (if that makes sense!) - but doesn't feel fluid filled - almost looks like a larger skin tag. It's small and we were told to just keep an eye on it, that it could be removed in the future. Never was it mentioned that it could be a branchial cleft cyst. Fast forward to now and under the skin there is now a hard-ish mass about the size of a marble. The outside of the skin hasn't changed but under the skin has. My son also had surgery at 3 weeks old for pyloric stenosis so our pediatrician recommended we go back to the pediatric surgeon for a consult. He knew what it was right away but due to my son being so little, he wants to wait another month until his neck/head is stronger and more defined to do another examination and schedule surgery from there. By just looking at it, he's pretty sure it's the fourth type, which he admitted was very rare. He has only done one of these surgeries and said if it indeed was the fourth type, he would want his colleauge to join him in the operating room. He's a wonderful surgeon (we can barely see the scars from our sons pyloric stenosis surgery!) and we are impressed with his honesty and knowledge. We live about 40 minutes outside New York City and travel to the Maria Ferari Childrens Hospital at Westchester Medical Center for the surgeon - 150% worth the almost hour drive. We have not seen a pedatric ENT, but will inquire...however, we feel confident that the surgeon knows what he's talking about. Because the hospital is a teaching hospital and university, our surgeon has also taught his med students about branchial cleft cysts and will be showing us his lecture videos at our next visit, lol. I'll admit it...I'm scared if it is the fourth type. The internet can do a really good job at scaring you too! I try to take everything lightly...but it's hard sometimes. I know it's the right thing to do, I don't want to "wait and see" like a lot of people do, and it's not what our surgeon has recommended either. Infection is the last thing I want to deal with. My son's does not leak any fluid and is completely closed from the outside. It doesn't seem to be painful but I know infection could cause pain the future. Again - thank you for this! And I'm so glad your daughter is doing great!
ReplyDeleteThanks for sharing Emily! So glad this helped you a bit! Be sure to come back and let us know how things turned out--if you read my post about the four types of abnormalities, you'll see that skin tags are sometimes seen in the 2nd type...which makes me think that's probably what yours will end up being. We'll keep our fingers crossed for a nice, uncomplicated case for your son! :)
ReplyDeleteHey Kelly. Our 3 year old is about to go through this and we are really quite concerned. I was wondering if I may contact you to share a picture and get your thoughts on some things? If I can, my email address is cameronsmith38@gmail.com
ReplyDeleteThank you for this blog, it has been incredibly helpful!
Hello. My 11 month daughter was diagnosed with branchial cleft cyst. Do u mind sharing your story? How did your surgery go? She has type 1
DeleteThank you for this blog. I'm 22 and everytime I had a throat infection in my childhood my 'right gland' would swell up and then disappear again with antibiotics. However, this year the unsightly lump has stayed put even when I have been perfectly healthy! It wasn't until the week before my graduation I noticed how bad my neck looked in a photograph. A doctors appointment and an ultra sound later, I've been told I need to see an ENT specialist to maybe get the branchial cleft cyst out! So good to have a diagnosis finally, and thank you for putting it all in layman's terms because everything else online is useless for someone with no medical background (like me). :)
ReplyDeleteThank you for this blog! It is really helpful. I've been googling like crazy and everything that shows up is all medical mumbo-jumbo. I wanted to hear stories of people's experiences and this has been awesome. When my daughter was born, I noticed an area on her neck that looked like two little bumps side by side. They are hard little lumps. I asked her pediatrician at her post hospital follow up and she didn't seem all that concerned but said I could have an ultrasound done. I honestly don't think she knew what to think of it so she just blew it off. I went and got her the ultrasound at 8 days old and even still her pediatrician kind of blew it off as no big deal. I decided to take her to an excellent pediatric ENT in our area. He said he's seen and handled several of these cases. He did follow up appointments with her every 6 months. At her 18 month appointment, he mentioned possibly doing the surgery. He kind of left it up to be my decision and didn't favor one way or the other. After a long agonizing conversation with my husband, we decided to have it removed. Her surgery is in 3 weeks and I'm terrified. He's doing her procedure as an outpatient basis, so she's coming home with us that night. I hope I'm making the right decision for her. Anyways, is there anything you recommend that we can do to make her comfortable and to help her through this surgery? Any advice?
ReplyDeleteThank you! I love hearing from parents who found us helpful--that was always my intent, because I couldn't find anything like this out there when I was furiously Googling as well. ;)
ReplyDeleteFor her surgery, I would say earlier is better, to an extent (I wouldn't want to do this on a newborn or infant). Throat surgeries are tough on anyone but it gets harder (recovery wise) the bigger you are. So doing it at 2 years old is probably perfect (ours was 18 months) For her peace of mind (and yours), I would say ask if you (or her Dad) can carry her back into the operation room; they do this often at Children's hospitals but regular ORs are not as comfortable with it, so you might need to badger them and expect to wear scrubs. It saves you and her from a dramatic arm-ripping scene in the pre-op room like they are kidnapping your child (you're already stressed enough) and keeps her (and parents) calmer going in. After, i would say expect lots of cuddles and sleeping, and follow whatever measures your ENT suggests (popsicles are a great one!) Ask for heavy flavoring on the antibiotics and Tylenol 3, or at least an option that is edible in case the antibiotic they give you is one of the strong ones they literally won't gag down. Back up plans are good when it's 3 in the morning and she won't take the meds. Good luck and let us know how it goes!
My son is ten months old and will be having removal surgery this week. I'm scared because I haven't been able to find any information on surgery on an infant. Have you heard of any?
ReplyDeleteHello. My 11 month old was diagnosed with branchial cleft cyst. How did your surgery go? We are worried and would love to wait if possible. But most likely we will have to operate sooner. I would appreciate if you share your story
DeleteMy daughter was 18 months, but she's a very small kid so was probably the size of some 12 month olds! I'm sure 10 months is fine, I think our doctor said anytime after 6 months and we waited a year. Good luck to you!
ReplyDeleteHi Kelly. I have a 3.5 month old son. He was born with a small indentation on his lower neck (docs all gave the "baby acne is normal" excuse) but it never went away. I've kept my eye on it since day 1 and noticed that if I pull the skin tight around it, it looks like a small red pimple, then if I gently squeeze the area a clear, mildly sticky fluid comes out... I haven't yet brought him to a doc about it because I finally starting doing the online research tonight and ran across your blog. I'm so scared that this is what he has. Im only 22, just got married April 2012, had my son May 2013... I just feel like the past year has been a blur already and now THIS is a potential threat. But I would like you to know that ready through all of your posts is helping me catch my breath and stop panicking quite as much. I'm crossing my fingers that he doesn't have this, but I think it's pretty clear to me that he does... I'm really happy to see how amazingly your daughter has recovered, though!
ReplyDeleteDear Kelly,
ReplyDeleteMy husband had surgery on BCC years ago and has not stopped having sinus drainage since. The doctor said he probably has allergies... Which he must have got over night since he never had this problem before. Right? He has had two ENTs here in Grand Rapids , MI tell him that they feel there is no way that the Dr removed the entire cyst. They feel he left some of it... I remember him telling us that he putted " dissolvable packing into it???" Anyway, I wanted to ask who you may have seen in AnnArbor. My email is Michlindy1@ Gmail.com. Any info would greatly be appreciated as we are so tired of every ENT starting with ... You need to see an Allergist. We feel a nerve is being stimulated somehow causing this constant drainage. His voice has never been the same and he immediately list weight and has a hard time keeping it on... Almost like some nervous system is being affected causing things to speed up... Thus causing sinus drainage as well. Thank you in advance for any info you can shed on this matter.
Hi All,
ReplyDeleteI have come across this while researching for my daughter's Branchial cleft surgery. She was born with a pit near her right neck which looked more like a scratch. When she was 2.5 years In August 2016 this year her 'pit' got infected and we got her removal surgery done on 14 dec 2016, however there is a mole I can see right at the start of her incision scar. Hopefully I get an appointment for tomorrow. In the meanwhile pls help me people, has anyone come across such a thing? Are these just simple stiches or has the pit moved to a different place. Please help!!