Guest guest Posted June 1, 2010 Report Share Posted June 1, 2010 Not in the first year. Yeah its a bummer as I was a regular swimmer. After a year I went with OTC ear plugs, of course with doctor's approval. Just need to maintain a dry ear as much as possible out of the water. Check with your doctor for the appropriate drops that helps dry the ear. From: mailtomiddlemas <mailtomiddlemas@...>cholesteatoma Sent: Tue, June 1, 2010 11:03:12 AMSubject: Anyone swim with CWD? Can you tell me how? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2010 Report Share Posted June 1, 2010 Is this standard? My daughter had her c toma removed last Nov. I don't ever remember the dr saying this. I just left a message for him. But, she only 2.5 years old, so I'm wondering if a wading pool is different than actualy Sent from my Verizon Wireless BlackBerryFrom: Wann <nwann_2000@...>Date: Tue, 1 Jun 2010 11:46:52 -0700 (PDT)<cholesteatoma >Subject: Re: Anyone swim with CWD? Not in the first year. Yeah its a bummer as I was a regular swimmer. After a year I went with OTC ear plugs, of course with doctor's approval. Just need to maintain a dry ear as much as possible out of the water. Check with your doctor for the appropriate drops that helps dry the ear.From: mailtomiddlemas <mailtomiddlemas >cholesteatoma Sent: Tue, June 1, 2010 11:03:12 AMSubject: Anyone swim with CWD? Can you tell me how? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2010 Report Share Posted June 1, 2010 Thank you . So, she had an enormous congenital c-toma (surgery took 10.5 hours). The e-tube has never been brought up. Is a congenital c-toma and e-tube related. She's never had an ear infection. Any info is appreciated. Thank you, NimmonsSent from my Verizon Wireless BlackBerryFrom: Wann <nwann_2000@...>Date: Tue, 1 Jun 2010 12:01:12 -0700 (PDT)<cholesteatoma >Subject: Re: Anyone swim with CWD? It depends on the patient and the doctor in all cases. Like many on this board the cause of our problem stems from dysfunctional eustacian tube, if you don't routinely inflate the tube, the infection starts. Inflating the tube helps rid of the debris build up. Depending on how severe the c-toma is/was, the doctor may not allow swiming or water contact.From: "tiffanynimmonsrocketmail" <tiffanynimmonsrocketmail>C toma <cholesteatoma >Sent: Tue, June 1, 2010 2:54:52 PMSubject: Re: Anyone swim with CWD? Is this standard? My daughter had her c toma removed last Nov. I don't ever remember the dr saying this. I just left a message for him. But, she only 2.5 years old, so I'm wondering if a wading pool is different than actualy Sent from my Verizon Wireless BlackBerryFrom: Wann <nwann_2000 (DOT) com> Date: Tue, 1 Jun 2010 11:46:52 -0700 (PDT)<cholesteatoma>Subject: Re: Anyone swim with CWD? Not in the first year. Yeah its a bummer as I was a regular swimmer. After a year I went with OTC ear plugs, of course with doctor's approval. Just need to maintain a dry ear as much as possible out of the water. Check with your doctor for the appropriate drops that helps dry the ear.From: mailtomiddlemas <mailtomiddlemas>cholesteatomaSent: Tue, June 1, 2010 11:03:12 AMSubject: Anyone swim with CWD? Can you tell me how? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2010 Report Share Posted June 1, 2010 Mine was acquired, I think, but severe that it was resident for 1.5 years before any symptoms arose. Not sure how the doctor would propose how to inflate any infants ears if they cannot do it themselves. I use the Politzer technique, http://emedicine.medscape.com/article/874348-overview CAUTION - use only under doctor supervision! From: "tiffanynimmons@..." <tiffanynimmons@...>C toma <cholesteatoma >Sent: Tue, June 1, 2010 3:06:06 PMSubject: Re: Anyone swim with CWD? Thank you . So, she had an enormous congenital c-toma (surgery took 10.5 hours). The e-tube has never been brought up. Is a congenital c-toma and e-tube related. She's never had an ear infection. Any info is appreciated. Thank you, Nimmons Sent from my Verizon Wireless BlackBerry From: Wann <nwann_2000 (DOT) com> Date: Tue, 1 Jun 2010 12:01:12 -0700 (PDT) <cholesteatoma> Subject: Re: Anyone swim with CWD? It depends on the patient and the doctor in all cases. Like many on this board the cause of our problem stems from dysfunctional eustacian tube, if you don't routinely inflate the tube, the infection starts. Inflating the tube helps rid of the debris build up. Depending on how severe the c-toma is/was, the doctor may not allow swiming or water contact. From: "tiffanynimmons@ rocketmail. com" <tiffanynimmons@ rocketmail. com>C toma <cholesteatoma>Sent: Tue, June 1, 2010 2:54:52 PMSubject: Re: Anyone swim with CWD? Is this standard? My daughter had her c toma removed last Nov. I don't ever remember the dr saying this. I just left a message for him. But, she only 2.5 years old, so I'm wondering if a wading pool is different than actualy Sent from my Verizon Wireless BlackBerry From: Wann <nwann_2000 (DOT) com> Date: Tue, 1 Jun 2010 11:46:52 -0700 (PDT) <cholesteatoma> Subject: Re: Anyone swim with CWD? Not in the first year. Yeah its a bummer as I was a regular swimmer. After a year I went with OTC ear plugs, of course with doctor's approval. Just need to maintain a dry ear as much as possible out of the water. Check with your doctor for the appropriate drops that helps dry the ear. From: mailtomiddlemas <mailtomiddlemas>cholesteatomaSent: Tue, June 1, 2010 11:03:12 AMSubject: Anyone swim with CWD? Can you tell me how? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2010 Report Share Posted June 1, 2010 Hi , My son Joe had his 1st surgery for congenital ctoma when he was 5, unfortunately on March 3 he had to have it removed again as it grew back. His surgery was no where near as long as your daughter's(poor little thing). But he has just got the all clear to swim (about 3 weeks ago, handy now that we are in winter). We were told to use the same cotton ball trick until his ear had healed. He had his ear canal widened & ear drum repaired with skin grafts. We were told he had to keep it totally dry ie in the bath, no swimming at all. Now that it is all healed & water can not get in behind the ear drum - all is fine. I'd check with your doctor. Joe had canal wall up surgery & therefore his ear is intact. If your daughter had canal wall down surgery, the ear will be open & it is a totally different situation.Hopefully your surgeon forgot to mention she could now get her ear wet, we were obsessed with it as we live right near the beach & kept asking! Good luck Donna From: "tiffanynimmons@..." <tiffanynimmons@...>C toma <cholesteatoma >Sent: Wed, 2 June, 2010 5:00:38 AMSubject: Re: Anyone swim with CWD? Sorry, I accidentally hit send. I'll cont where I left off. I'm wondering since she's only 2.5 years old, is a wading pool or sprinkler ok since she won't be submerged in water??? Although, there is splashing involved? For a bath, the Dr. just told us a cotton ball with vaseline on it. What are your thoughts???Thank you to everyone!This group is full of wonderful people:) Nimmons Sent from my Verizon Wireless BlackBerry From: tiffanynimmons@ rocketmail. com Date: Tue, 1 Jun 2010 18:54:52 +0000 C toma<cholesteatoma> Subject: Re: Anyone swim with CWD? Is this standard? My daughter had her c toma removed last Nov. I don't ever remember the dr saying this. I just left a message for him. But, she only 2.5 years old, so I'm wondering if a wading pool is different than actualy Sent from my Verizon Wireless BlackBerry From: Wann <nwann_2000 (DOT) com> Date: Tue, 1 Jun 2010 11:46:52 -0700 (PDT) <cholesteatoma> Subject: Re: Anyone swim with CWD? Not in the first year. Yeah its a bummer as I was a regular swimmer. After a year I went with OTC ear plugs, of course with doctor's approval. Just need to maintain a dry ear as much as possible out of the water. Check with your doctor for the appropriate drops that helps dry the ear. From: mailtomiddlemas <mailtomiddlemas>cholesteatomaSent: Tue, June 1, 2010 11:03:12 AMSubject: Anyone swim with CWD? Can you tell me how? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2010 Report Share Posted June 3, 2010 Hi My now 12 year old daughter had CWD last year. She could not swim, get water in her ear in the bath etc for a few months after the surgery. Once it was all healed, we were advised to get a custom made swimming ear plug made. It took three times to get it okay, even then it still leaks a very small amount. The doctor said to coat it in vaseline and then to dry the ear afterwards with a twisted out tissue (kleenex). [the audiologist who made the plug suggested that vaseline might reduce the life of the plug, we decided to just replace them regularly] We have been doing this for a good 6-8 months now and she has had only one very minor episode of discharge since. And she does swimming training once a week for at least 2 hours. She goes back for second look operation and reconstruction next week (if her chest infection has cleared up enough). Not swimming would have been very bad for her self esteem so we were very keen to get a solution that we and the doctors could live with. So far so good. good luck Hillary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2010 Report Share Posted June 3, 2010 Donna, thank u so much. By the way, le had a cwd. I talked with the nurse. She is getting fitted for an ear plug next week. In the mean time, we are still using the cotton ball and vaseline. The dr. said she can go swimming (well splashing in a pool, since she's 2.5 years old). BUT, not to go in a lake. I thought that was interesting. I'm assuming bc its so dirty. So, when using the cotton ball method, did you ever wipe away the vaseline with a tissue?Thanks again! NimmonsSent from my Verizon Wireless BlackBerryFrom: Donna McFadden <donna.mcfadden12@...>Date: Tue, 1 Jun 2010 22:53:01 -0700 (PDT)<cholesteatoma >Subject: Re: Anyone swim with CWD? Hi , My son Joe had his 1st surgery for congenital ctoma when he was 5, unfortunately on March 3 he had to have it removed again as it grew back. His surgery was no where near as long as your daughter's(poor little thing). But he has just got the all clear to swim (about 3 weeks ago, handy now that we are in winter). We were told to use the same cotton ball trick until his ear had healed. He had his ear canal widened & ear drum repaired with skin grafts. We were told he had to keep it totally dry ie in the bath, no swimming at all. Now that it is all healed & water can not get in behind the ear drum - all is fine. I'd check with your doctor. Joe had canal wall up surgery & therefore his ear is intact. If your daughter had canal wall down surgery, the ear will be open & it is a totally different situation.Hopefully your surgeon forgot to mention she could now get her ear wet, we were obsessed with it as we live right near the beach & kept asking! Good luck Donna From: "tiffanynimmonsrocketmail" <tiffanynimmonsrocketmail>C toma <cholesteatoma >Sent: Wed, 2 June, 2010 5:00:38 AMSubject: Re: Anyone swim with CWD? Sorry, I accidentally hit send. I'll cont where I left off. I'm wondering since she's only 2.5 years old, is a wading pool or sprinkler ok since she won't be submerged in water??? Although, there is splashing involved? For a bath, the Dr. just told us a cotton ball with vaseline on it. What are your thoughts???Thank you to everyone!This group is full of wonderful people:) Nimmons Sent from my Verizon Wireless BlackBerryFrom: tiffanynimmons@ rocketmail. com Date: Tue, 1 Jun 2010 18:54:52 +0000C toma<cholesteatoma>Subject: Re: Anyone swim with CWD?Is this standard? My daughter had her c toma removed last Nov. I don't ever remember the dr saying this. I just left a message for him. But, she only 2.5 years old, so I'm wondering if a wading pool is different than actualy Sent from my Verizon Wireless BlackBerryFrom: Wann <nwann_2000 (DOT) com> Date: Tue, 1 Jun 2010 11:46:52 -0700 (PDT)<cholesteatoma>Subject: Re: Anyone swim with CWD? Not in the first year. Yeah its a bummer as I was a regular swimmer. After a year I went with OTC ear plugs, of course with doctor's approval. Just need to maintain a dry ear as much as possible out of the water. Check with your doctor for the appropriate drops that helps dry the ear.From: mailtomiddlemas <mailtomiddlemas>cholesteatomaSent: Tue, June 1, 2010 11:03:12 AMSubject: Anyone swim with CWD? Can you tell me how? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2010 Report Share Posted June 6, 2010 Thank you so much for your reply. It is very helpful. From: hillary_conway <hillary_conway@...>Subject: Re: Anyone swim with CWD?cholesteatoma Date: Thursday, June 3, 2010, 6:43 AM Hi My now 12 year old daughter had CWD last year. She could not swim, get water in her ear in the bath etc for a few months after the surgery. Once it was all healed, we were advised to get a custom made swimming ear plug made. It took three times to get it okay, even then it still leaks a very small amount. The doctor said to coat it in vaseline and then to dry the ear afterwards with a twisted out tissue (kleenex). [the audiologist who made the plug suggested that vaseline might reduce the life of the plug, we decided to just replace them regularly] We have been doing this for a good 6-8 months now and she has had only one very minor episode of discharge since. And she does swimming training once a week for at least 2 hours. She goes back for second look operation and reconstruction next week (if her chest infection has cleared up enough). Not swimming would have been very bad for her self esteem so we were very keen to get a solution that we and the doctors could live with. So far so good. good luck Hillary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2010 Report Share Posted June 6, 2010 Thanks for your reply. My doctor's daughter said she would be able to swim but he seems to want to minimize everything and we keep getting worse news than he had predicted. The other replies have seemed positive about swimming however. Her doctor did say that sudden cold temperature could cause vertigo and dizziness. Any chance the coldness of the water rather than the water itself water was the problem? Thanks again. mg From: Christenson, <lisa.christenson@...>Subject: Re: Anyone swim with CWD?"cholesteatoma " <cholesteatoma >Date: Wednesday, June 2, 2010, 9:21 AM In my case, I’m unable to get water in my ear for the rest of my life. The reason is because I had four surgeries in each ear, and the cholesteatoma was located around my hearing bones/facial nerve/etc. During surgery, my canals were made much bigger so there is simply no way to prevent water from getting into my ear well enough to keep it from hitting the nerves exposed in my ears. I think all cases vary tho…just telling you mine. During showers/etc. I am able to put cotton in my ears to prevent any water splashing into them, but I would be afraid to try ear plugs in case they failed and water got in. I had a time when I was walking in the waves in Mexico and thankfully was holding onto a friend because a wave splashed water into my ear, and just that quick, I couldn’t tell what was up and what was down. I was able to turn my head to drain the water out and then I was fine. However, I’ve heard many people on this forum talk about swimming all the time after surgery so everyone is different. Good luck to you! Christenson IDQ Companies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2010 Report Share Posted June 8, 2010 Yes. it is the coldness of the water that would make it worse. Christenson Senior Communications Manager American Dairy Queen Corp. 952/ 830-0206 lisa.christenson@... Visit our DQ blog at blog.dairyqueen.com! IDQ Companies Quote Link to comment Share on other sites More sharing options...
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