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Newbie: Single Sided CI Candidate/Tinnitus/Possible Auto Immune Related


David Babs
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Just found this community. First, thank you all for taking the time to be on this forum and sharing your personal stories as it's very helpful. I got SHL and thus lost my hearing and developed 24/7/365 tinnitus in my right ear 7-years ago, when I was 50. (Cause is unclear to me) I also get some dizziness / balance issues from time to time so I have been diagnosed with Menaires but it's mostly the hearing loss and tinnitus that cause me daily work/life issues that many of you are all to familiar with. (My ENT wants to do a Transmastoid Labrynthectomy and CI simutaneously and I'm not sure I'm comfortable with that as again, it's mainly the Hearing and Tinnitus that are issues for me) Recently, I have had debilitating bouts of chronic pain that seems to be moving around my body for the last few months. The pain is so bad I had to leave my job and spend most of my time laying on the floor trying to calm the inflamed area du jour down to an even tolerable level. (I can't get in to see a Rheumatist until September to start chasing the source of this chronic pain down...) Meantime, I am seriously considering a CI for the hearing and tinnitus and have a consult in a couple weeks to discuss that. As I am reading through the many posts on this forum, I see a number of them mentioning related autoimmune type issues as well as chronic pain. Unfortunately, my ENT has never really mentioned a possible connection between my chronic pain and my hearing issues. About 20-years ago I did have a doctor diagnose me with adrenal fatigue and I have battled related symtoms of and on to varing degrees, mostly chronic fatigue, ever since but I never considered that my SHL and related tinnitus in my right ear could potentially have been caused by such a condition, or related autoimmune disease? Now that my chronic pain is flaring in a much more profound and differant way, I am concerned that my good ear could be at risk and no practitioner seems to care to prioritize that and chase it down with me! So at this point I feel like I am kind of on my own to figure this out and would appreciate anyone's thoughts and/or advice you might have with regards to helping me understand this and what actions I should undertake as a result? For example, I have many questions, like;

  • How can one know what the actual cause of hearing loss was to determine any possible link to an autoimmune disorder?
  • If there is a link, who captains the treatment efforts or is it a coordination of care type effort between ENT & Rheumatist?
  • Should I hold off on getting the CI or Larynthectomy until I understand all of this better?
  • Are there other forums or resources out there that might help me?

Thank you in advance for any consideration and thoughts you might have. I am in a pretty bad place right now but reading through your stories I realize that I'm not alone in my suffering and many of you have had it worse and for longer than me. The vast majority of people we come into contact with, especially our friends and family will never know the level of physical and mental anguish that we suffer and so while that sucks, it's also a reality that we can either dwell in, or press on and find something positive to hold on to! Thank you all again for sharing and may God bless you today and keep you near. 

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@David Babs

Welcome to HearPeers!

I developed Ménière’s disease in my right ear following several surgeries in that ear aimed at restoring acoustic hearing which failed and caused complications.  Then I had a transcanal labrynthectomy surgery in my right ear so that the Ménière’s symptoms, which were so terrible and making life very complicated, would no longer happen.  I knew I would lose the remaining hearing in that ear with that surgery.  The surgery solved all of the Ménière’s symptoms right away and that ear remained completely deaf for 24 years.  Then we implanted it.  It is an amazing CI ear.  Loves all sounds.  If I had the option back then to combine the transcanal labrynthectomy surgery to rid my life of Ménière’s symptoms and simultaneously implant that ear to avoid the 24 years of complete deafness on that side, I would’ve taken it.  I am glad that is an option now for others.

I shared this story in this link of you are interested.

https://cochlearimplantbasics.com/2021/06/mary-beth-napoli/

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On 8/5/2022 at 11:30 AM, David Babs said:

Just found this community. First, thank you all for taking the time to be on this forum and sharing your personal stories as it's very helpful. I got SHL and thus lost my hearing and developed 24/7/365 tinnitus in my right ear 7-years ago, when I was 50. (Cause is unclear to me) I also get some dizziness / balance issues from time to time so I have been diagnosed with Menaires but it's mostly the hearing loss and tinnitus that cause me daily work/life issues that many of you are all to familiar with. (My ENT wants to do a Transmastoid Labrynthectomy and CI simutaneously and I'm not sure I'm comfortable with that as again, it's mainly the Hearing and Tinnitus that are issues for me) Recently, I have had debilitating bouts of chronic pain that seems to be moving around my body for the last few months. The pain is so bad I had to leave my job and spend most of my time laying on the floor trying to calm the inflamed area du jour down to an even tolerable level. (I can't get in to see a Rheumatist until September to start chasing the source of this chronic pain down...) Meantime, I am seriously considering a CI for the hearing and tinnitus and have a consult in a couple weeks to discuss that. As I am reading through the many posts on this forum, I see a number of them mentioning related autoimmune type issues as well as chronic pain. Unfortunately, my ENT has never really mentioned a possible connection between my chronic pain and my hearing issues. About 20-years ago I did have a doctor diagnose me with adrenal fatigue and I have battled related symtoms of and on to varing degrees, mostly chronic fatigue, ever since but I never considered that my SHL and related tinnitus in my right ear could potentially have been caused by such a condition, or related autoimmune disease? Now that my chronic pain is flaring in a much more profound and differant way, I am concerned that my good ear could be at risk and no practitioner seems to care to prioritize that and chase it down with me! So at this point I feel like I am kind of on my own to figure this out and would appreciate anyone's thoughts and/or advice you might have with regards to helping me understand this and what actions I should undertake as a result? For example, I have many questions, like;

  • How can one know what the actual cause of hearing loss was to determine any possible link to an autoimmune disorder?
  • If there is a link, who captains the treatment efforts or is it a coordination of care type effort between ENT & Rheumatist?
  • Should I hold off on getting the CI or Larynthectomy until I understand all of this better?
  • Are there other forums or resources out there that might help me?

Thank you in advance for any consideration and thoughts you might have. I am in a pretty bad place right now but reading through your stories I realize that I'm not alone in my suffering and many of you have had it worse and for longer than me. The vast majority of people we come into contact with, especially our friends and family will never know the level of physical and mental anguish that we suffer and so while that sucks, it's also a reality that we can either dwell in, or press on and find something positive to hold on to! Thank you all again for sharing and may God bless you today and keep you near. 

 

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