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Juliette

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Hi Juliette,

Erik said that Ben, from Med-El, will be overseeing Hear Peers. I hope you hear from him soon.

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Hi Juliette! 

 

I'm sorry but I haven't received anything from you. I've written you a private message to find out more. Look forward to hearing from you!

 

Ben 

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Hi Ivana,

 

Erik is no longer a moderator so I sent a message to the new one.  Still waiting to hear from him.  My doctor referred me for some tinnitus counselling however the focus of the counselling was on meditation and sound therapy that I did not find helpful for my pulsatile tinnitus.  Still not getting much sleep but trying to focus on the hearing experience and coping as best I can with the thumping in my ear.

 

 

Hi Juliette,

 

sorry that proposed treatment does not work for you...:(

As I have previously elaborated, your tinnitus is objective so it is hard to ignore it. It is much different when tinnitus is heard only by the patient - that is treatable with these sessions.

Ben is here - hope he can help you more specifically regarding your issues... ^_^

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It has been more than 12 months since my last post.  I am enjoying the level of improvement in my hearing but still struggling with the pulsatile tinnitus.  Two ENTs agree that the tinnitus is caused by pressure on the sigmoid sinus from the implant and one has suggested removing the implant.  Both ENTs have said there is no guarantee that the tinnitus will go if the implant is removed so I will be worse off than before the implant.  Less hearing and still having to endure the tinnitus.  I would still recommend the procedure to anyone who asks but advise to choose their surgeon very carefully.  I would never recommend the one who performed my surgery and I have no interest in seeing him again.

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Hi Juliette,

I have recently been thinking what was going on further with you.

If I may ask, if they do not know whether removing the internal unit would make it go the pulsatile tinnitus than something else could be a reason.

I still think that your device shouldn't be removed totally just relocated which is possible. 

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Hi Ivana,

the surgeons think the damage to the sigmoid sinus done may be irreversible. There was discussion about lifting the implant but there was no mention of that in the report sent to my doctor or the quote for surgery.  I am in the process of writing to the surgeon for clarification.  I never had history of any type of tinnitus prior to the surgery however it was present immediately following the surgery.

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Hello Juliette

I am enclosing within this post a link to a study where it was successfully reconstructed a sigmoid sinus wall. It is possible to be done. I would encourage you to find a surgeon who is confident enough to revise your case. 

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0164728

https://www.ncbi.nlm.nih.gov/pubmed/25991486

Pulsatile tinnitus can be a real pain ...

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I love it when @Ivana Marinac shares research links!

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17 hours ago, Mary Beth said:

I love it when @Ivana Marinac shares research links!

Thank you, Mary Beth...:wub:

I believe that sharing knowledge give patient a reasonable chance to find at least confirmation if not an information to help themselves. I was given that chance so I fully understand how this approach can help others. Last year when I was given a chance to opt for one of my earliest wish I ever remember I have asked aloud. This is how I understand that I can and should help. :)

Hope Juliette will finally find her solution and that she will not give up before a good fight... 

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