Jump to content

Accessories


babygirl
 Share

Recommended Posts

Hi Everyone! I have custody of my four year old granddaughter who has bilateral profound SNHL. Her first set of omplanys were activated 12/17/2012. After about thtre months, she would scream and fight us when we put them on. She acted as if they were hurting her. She would then go to her room and hide them! Then, after s few months she stopped having this reaction. But, she seemed to be regressing with speech therapy snd would ignore me when I called her. We found out in May that both implants failed! Considering the 2% failure rate, I have been baffled by this! The Med-El audi was in the OR for the explant and implantation of new devices. There was nothing visual to indicate cause of failure and they were sent to Innsbrook for engineers to determine. The nrw imolants were activated on 6/6 and med-el rep brought her Rondos, which are great, but they keep falling off. The other day she eas outside playing and got very frustrated. I had to take them off because she eas so frustrated. I called audi and we will go in Friday for stronger magnets. It was suggested to me to try the nrw sport headband for them. I called med-el anf was told insurance will not civer tbis and the cost is $40! This is absolutely outrageous for a headband. We have a very limited income and my budget just won't stretch that far. I personally feel that this should be covered by insurance because of the risk of the alligator clip not holding and them being damaged. Nevertheless, I find it appalling that

med-el charges such a ridiculous price for a strip of material with pockets! Because of the extreme heat here in Georgia, the  only way to havr her outdoirs very much is to go to the pool. Some days we are there three hours and she cannot wear her processors. I was  looking forward to the waterproof covering for the Rondos, but the price will probably be much too high for me to purchase! Are there any other folks in this  group who are "poor?" If so, how do you manage to resolve issues like this? She is my top priority and if her processors will not stay on she is getting no benefit from them! I understand that corporations are about profit, but I do not understand these prices! This entire experience with bilateral failures has really stressed me because she has lost precious time. I will not put her through the frustration of her playtime being disrupted. It took up three days to get her to wear them because she thought they were going to "hurt" her. She had to realize they were "okay." She is not going to want to wear them if she cannoy play without them falling off. If anyone has any suggestions that may help, please let me know.

Link to comment
Share on other sites

Hi Everyone! I have custody of my four year old granddaughter who has bilateral profound SNHL. Her first set of omplanys were activated 12/17/2012. After about thtre months, she would scream and fight us when we put them on. She acted as if they were hurting her. She would then go to her room and hide them! Then, after s few months she stopped having this reaction. But, she seemed to be regressing with speech therapy snd would ignore me when I called her. We found out in May that both implants failed! Considering the 2% failure rate, I have been baffled by this! The Med-El audi was in the OR for the explant and implantation of new devices. There was nothing visual to indicate cause of failure and they were sent to Innsbrook for engineers to determine. The nrw imolants were activated on 6/6 and med-el rep brought her Rondos, which are great, but they keep falling off. The other day she eas outside playing and got very frustrated. I had to take them off because she eas so frustrated. I called audi and we will go in Friday for stronger magnets. It was suggested to me to try the nrw sport headband for them. I called med-el anf was told insurance will not civer tbis and the cost is $40! This is absolutely outrageous for a headband. We have a very limited income and my budget just won't stretch that far. I personally feel that this should be covered by insurance because of the risk of the alligator clip not holding and them being damaged. Nevertheless, I find it appalling that

med-el charges such a ridiculous price for a strip of material with pockets! Because of the extreme heat here in Georgia, the  only way to havr her outdoirs very much is to go to the pool. Some days we are there three hours and she cannot wear her processors. I was  looking forward to the waterproof covering for the Rondos, but the price will probably be much too high for me to purchase! Are there any other folks in this  group who are "poor?" If so, how do you manage to resolve issues like this? She is my top priority and if her processors will not stay on she is getting no benefit from them! I understand that corporations are about profit, but I do not understand these prices! This entire experience with bilateral failures has really stressed me because she has lost precious time. I will not put her through the frustration of her playtime being disrupted. It took up three days to get her to wear them because she thought they were going to "hurt" her. She had to realize they were "okay." She is not going to want to wear them if she cannoy play without them falling off. If anyone has any suggestions that may help, please let me know.

Link to comment
Share on other sites

Hi Everyone! I have custody of my four year old granddaughter who has bilateral profound SNHL. Her first set of omplanys were activated 12/17/2012. After about thtre months, she would scream and fight us when we put them on. She acted as if they were hurting her. She would then go to her room and hide them! Then, after s few months she stopped having this reaction. But, she seemed to be regressing with speech therapy snd would ignore me when I called her. We found out in May that both implants failed! Considering the 2% failure rate, I have been baffled by this! The Med-El audi was in the OR for the explant and implantation of new devices. There was nothing visual to indicate cause of failure and they were sent to Innsbrook for engineers to determine. The nrw imolants were activated on 6/6 and med-el rep brought her Rondos, which are great, but they keep falling off. The other day she eas outside playing and got very frustrated. I had to take them off because she eas so frustrated. I called audi and we will go in Friday for stronger magnets. It was suggested to me to try the nrw sport headband for them. I called med-el anf was told insurance will not civer tbis and the cost is $40! This is absolutely outrageous for a headband. We have a very limited income and my budget just won't stretch that far. I personally feel that this should be covered by insurance because of the risk of the alligator clip not holding and them being damaged. Nevertheless, I find it appalling that

med-el charges such a ridiculous price for a strip of material with pockets! Because of the extreme heat here in Georgia, the  only way to havr her outdoirs very much is to go to the pool. Some days we are there three hours and she cannot wear her processors. I was  looking forward to the waterproof covering for the Rondos, but the price will probably be much too high for me to purchase! Are there any other folks in this  group who are "poor?" If so, how do you manage to resolve issues like this? She is my top priority and if her processors will not stay on she is getting no benefit from them! I understand that corporations are about profit, but I do not understand these prices! This entire experience with bilateral failures has really stressed me because she has lost precious time. I will not put her through the frustration of her playtime being disrupted. It took up three days to get her to wear them because she thought they were going to "hurt" her. She had to realize they were "okay." She is not going to want to wear them if she cannoy play without them falling off. If anyone has any suggestions that may help, please let me know.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
 Share

×
×
  • Create New...