Does Superior Canal Dehiscence surgery prove all H are in the inner ear?

Discussion in 'Support' started by japongus, Jun 1, 2015.

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    1. japongus

      japongus Member

      Tinnitus Since:
      1998
      Let's see if I got this right, I'm always eager to learn. H bothers me most at the change of a sound, and the tensor tympani is more involved in sound change, whereas the stapedius is involved in the sound itself.

      Or Superior Canal dehiscence, which is apparently treatable, and it's about this part in between the inner ear and the brain where there should be a bone, I can't detail their specifics but we have a pubmed summary about it here, in addition to a facebook page with lots of information.

      Now, I want to know if I can say to TRT doctor when he talks about the H I got from sound trauma, ''you want to prove my H is inside the brain, have you lightened up the brain of some guy with H as a result of dehiscence or tensor/stapedius to see if he also has ''H in his limbic system like all the obsessive compulsive disorder lunatics you're trying to bag me into?'' Or is there something wrong in my hypothesis?
       
    2. quietatnight
      Frustrated

      quietatnight Member

      Location:
      Rockford IL
      Tinnitus Since:
      1990
      Cause of Tinnitus:
      Accustic tramma due being too close to a fire craker when I was a kid
      Well that post just gave me a headache reading it :(

      WHAT ?
       
    3. japongus

      japongus Member

      Tinnitus Since:
      1998
      There's this thing known as superior canal dehiscence where the hyperacusis is in between the ear and the brain. And then there are TRT doctors who claim the hyperacusis is in the brain. Does the former prove the latter can also possibly not be in the brain too?

      There are also people with hyperacusis as a result of issues in their tensor or stapedius muscles in the ear.

      TRT doctors claim the limbic system lights up in people with tinnitus and hyperacusis, but if it also lights up in people with stapedius, tensor or superior canal dehiscence they're full of shit.
       
    4. Nucleo

      Nucleo Member Benefactor

      Tinnitus Since:
      02/2011
      Superior canal dehiscence is pretty rare, I would say even moreso than hyperacusis.

      Both the stapedius muscle and the tensor tympani are innervated by the facial nerve, and not the auditory nerve so it's the brain that activates those pathways when receiving input from the cochlea.

      I'm not quite sure what you are trying to prove here. Are you just trying to ridicule your doctor?
       
    5. quietatnight
      Frustrated

      quietatnight Member

      Location:
      Rockford IL
      Tinnitus Since:
      1990
      Cause of Tinnitus:
      Accustic tramma due being too close to a fire craker when I was a kid
      @japongus

      I'm sorry but I just don't believe that ANY doctor has ANY idea what is going on with tinnitus or hyperacusis, specially hyperacusis. The scary part is even if they did, there's nothing that can be done about it. Plus everyone's case's seems so different. For exsample I don't get pain from loud noise, like slamming a cabinet door or dropping a dish, like most people do. My pain just comes out of no where, for do reason at all. I could be in a room with NO sound at all, and all the sudden I will start to get ear pain, either ear or both. It may stay for a few minutes or an entire day, and then just go away just as mysteriously. That's not how hyperacusis normaly works. I have come up with another thing, I believe that there are very few people in the WORLD that have hyperacuisis as bad as the people in here. I bet not more then a hand few. Think about it, our support site goes all over the world but we only have a few that complain and they are always the same people. What we have is rare, which makes it even more upsetting and more devestating. Either way it's a real mess. I was wondering of what has happened to the other's over the years that had been suffering with really bad tinnitus & hyperacusis for many years, that just dissappeared off of TT ??? Are they just sitting in their homes, or going from doctor to doctor country to country trying to find an answer ? are they still even a live anymore ? Maybe by some miricle they got better ? No one knows ?

      Sorry for the rant but I'm just so tired of it all,,, I think about not getting out of bed every morning to have to face another day of this hell, and sucide seems to soothing lately.

      I'm sorry, I'm just thinking out loud here ,,,and maybe I should just keep my mouth shut

      And what really make me so mad is that it seem's like every week there's some new magic bullet drug out there floating around that's in Phase 1, or 2 or what ever maybe be phase 100, that will cure us, but won't available until 2090, Who cares, the only reason whey we don't have a cure right now is simple " MONEY " it's always about the "MONEY " these research people need to get as much money as they can, so they can keep making " MONEY ", Heaven forbid they have a drug that works and release it,,, before they nurse it along with this study, then that study and they study it for 15 or 30 years and squezz every dime out of it. Those people don't care, when they go home, they sleep in their nice warm beds in SILENCE,,,,,,, WE DON'T,,,, makes me sick their all such a bunch greedy bastards, and I don't want to even get started on the FDA or the drug companies. " MORE MONEY to be made "

      I'm don'e sorry, Yes I'm mad Yes I'm very fustrated and feel cheated in life ...I'm so upset that I'm not even going to check this letter for spelling ....
       
      • Like Like x 1
    6. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      I'm sorry to say, but when I took keppra which works in the brain, via the KV3.1 channels, I was treated and cured of hyperacusis. So I don't believe it's in the ear at all.
       
    7. quietatnight
      Frustrated

      quietatnight Member

      Location:
      Rockford IL
      Tinnitus Since:
      1990
      Cause of Tinnitus:
      Accustic tramma due being too close to a fire craker when I was a kid
      Ok, Danny Boy

      When you told me I had to go to Spain for the Keppera, I just figured that it was not available in the US. Well, I just called my Pharmacist, and she said she has both the brand name Keppera ( in 500 Mill ) and the generic of that, which is called Levetiracetam. Unfortunately, my insurance company ( those cheap bastards ) will only cover the Generic version. Are You taking the Brand name ? or the generic ? Or do you know of any one who is taking the generic and getting the same results ? That's a pretty important question. I'm going to pursue this if the generic will help me. Please let me know. Now I just have to find a doctor that will prescribe it for me. I'm hoping that My GP will. But I have a bad feeling that he will just send me to a neurologist. And then I have to hope that I can convince him to give it to me. This is going to be a little tricky. But I think is doable. It would only cost me a couple of dollars for like 60 or 80 pills, but if I have to foot the bill myself I'm looking at over $500 for the same amount of pills and I could not afford that the rest of my life. I could fight with the insurance company and make them give me the brand name if the doctor insists. I have done that before and have won.

      She said she never heard of Retigabine or Trobalt. I was surprised about that. She said that she thinks Keppra is prescribed for seizures generally but was not 100% sure.


      Please let me know what you think ?

      Thank You

      Louie
       
    8. lapidus

      lapidus Member

      Location:
      Sweden
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Noise induced
    9. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      I never said it wasn't available. I knew it was impossible to get a GP to prescribe anything. The generic should hopefully work, as it's the same compound. And it costs how much!? It's really, really cheap in the UK! Keppra is a anti-epileptic medication. You only need it for two months and it should rid you of hyperacusis.

      http://www.pharmacy2u.co.uk/productdetailpom.aspx?packid=89320

      60 tablets on a private prescription is 8.50.
       
    10. quietatnight
      Frustrated

      quietatnight Member

      Location:
      Rockford IL
      Tinnitus Since:
      1990
      Cause of Tinnitus:
      Accustic tramma due being too close to a fire craker when I was a kid
      @Danny Boy

      That's a lot more reasonable its nice that you can get it for that price.

      I'm looking into it and see who I can get to prescribe it for me.


      Louie
       
    11. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Crossover can occur below the level of the brain if there is damage that allows it to occur. The basic reflex arc is an example of crossover.
       

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