Upcoming Osteoma Surgery — Need Someone for Support

Discussion in 'Support' started by Selah1281, Oct 24, 2019.

    1. Selah1281

      Selah1281 Member Benefactor

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Unknown
      I would like someone to discuss my surgery with. I’ve received some information since scheduling it that is making me scared to go through with it.

      It seemed promising to help or eliminate my tinnitus. Now I’m not so sure.
       
    2. Daniel Lion
      Ape-like

      Daniel Lion Member Podcast Patron Benefactor Hall of Fame

      Location:
      SE Asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      @Greg Sacramento and @GregCA I believe are their forum names, also @FGG. But the first two members know their stuff, medical encyclopedias with shitloads of experience. I would post their names here, give them a shout brother. Honestly, since I’ve been on this forum, these guys have blown me away with their knowledge.
      Do that ASAP, please, I am sure they will help if they can.

      Praying for you friend... wish I could help, but out of my league...

      Take care, sincerely...
      Daniel
       
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    3. AUTHOR
      AUTHOR
      Selah1281

      Selah1281 Member Benefactor

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Unknown
      Thanks Daniel. I really am put out right now.
       
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    4. Daniel Lion
      Ape-like

      Daniel Lion Member Podcast Patron Benefactor Hall of Fame

      Location:
      SE Asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      I am sure... sounds scary... contact those guys... honest. They will be a good sounding board.
       
    5. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @Selah1281 @Daniel Lion Daniel, somehow I missed your mentions of me, but I'll respond form mention within this thread instead of your mention in the Suicide thread.

      Selah, back in time and never mentioned by me here, I had conservative osteoma middle ear surgery because of impediment of natural outward migration of earwax. There's many reasons to have this surgery, including when there's squeezing to the entrance to the external auditory canal. Not sure what started my problem, but it was probably cold water and secondhand smoke causing infection. I use to like to swim underwater or see how long I could hold my breathe under water. The surgery was a breeze without complications. Most of the time surgery is done after CT confirmation. There is some underlying discussion on biological process interaction, but if tinnitus or face numbness is present, it would be justified to have surgery.

      Before you go into surgery, use positive mental imagery to envision a happier future where your procedure is successful - associated though that your ringing may stop.
       
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    6. AUTHOR
      AUTHOR
      Selah1281

      Selah1281 Member Benefactor

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Unknown
      Thanks Greg for responding. My issue is I have hyperacusis too. My surgeon hasn’t really said anything about this but I spoke with Dr. Abraham Shulman and he basically said he didn’t think an osteoma could cause hyperacusis. I asked him if he felt the surgery wouldn’t help and he said I’m not saying that. I don’t know if that means he was just covering himself because I’m not his patient.

      Another doctor who works with Dr. Silverstein in Florida said he hadn't heard of osteomas causing hyperacusis either.

      I’ve seen no presentation of it in the literature about internal auditory canal osteoma so now I’m scared I’m making a bad decision. I know no one can make the decision but me, I’m just nervous.
       
    7. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      Is your surgeon an otolaryngologist - ENT or a neurotologist?

      Sound sensitivity and phrases like abnormal acuteness of hearing or auditory sensation is discuss in many ear osteoma studies, but not hyperacusis or within many short list neurosurgical glossary terminology listings.
      https://www.aans.org/Media/Glossary-of-Terminology
      Reference of hyperacusis is mentioned in medical journals.

      Maybe @GregCA would have some thoughts as he seems to had read/studied more about ear surgery than I have.
       
    8. Daniel Lion
      Ape-like

      Daniel Lion Member Podcast Patron Benefactor Hall of Fame

      Location:
      SE Asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      Hi bro, get in touch with @GregCA.

      You were getting pain in the face along with your tinnitus... true?

      Make a list of pros and cons... list it here if you wish...

      Sometimes hyperacusis arises from too much protection, ironically...

      I am glad Greg weighed in, reach out to GregCA, he's nice and he will share his knowledge with you.

      What are the cons of the surgery? This should be a determinant. You certainly sound like a viable candidate. If you have to, put off the surgery date until you are super comfortable...

      Stay proactive with your research... don't give up brother.

      Daniel
       
    9. AUTHOR
      AUTHOR
      Selah1281

      Selah1281 Member Benefactor

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Unknown
      Otolaryngologist. Thanks for the information.
       
    10. AUTHOR
      AUTHOR
      Selah1281

      Selah1281 Member Benefactor

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Unknown
      Pros
      -It could possibly reduce or eliminate my tinnitus.

      Cons
      -It could possibly be of no benefit
      -Dr. Shulman said it could introduce new tinnitus possibly. Talking to him was really discouraging. Like he crushed all my hopes. I had reached out hoping for some reassurance.
      -Sometimes operations on the ear result in hyperacusis so it could cause problems there.

      The thing is even if it is not the cause of my tinnitus osteomas can often lead to vestibular and hearing issues like vertigo, facial nerve weakness, tinnitus and hearing loss so it could compound my problems in the future. I have internal auditory canal narrowing or stenosis. So this increases the likelihood of future issues.

      Also since having tinnitus I’m super reactive to medicine and even supplements. All serotonin drugs have spiked me, curcumin has spiked me, sodium diclofenac has spiked me, Ambien has spiked me so if I still have tinnitus when I wake up after surgery the drugs they give me for pain will probably spike me.

      I just feel like this is my only chance. It’s such a rare diagnosis compounded with the narrow internal auditory canals. I’m not able to work right now. I’m struggling to take care of my kids. My ex now has complete control over my kids and if she chooses to come for child support I’m fucked. I am using what little money I have left to take care of them during my time now. I’m living with my mother. Everything has just fallen apart. I can’t sleep without medication. I’m a mess. My mom is resentful of me and treating me like shit. My father never checks on me (he will talk to me if I reach out). My ex bullies me because I’m vulnerable and she knows she holds all the cards right now. I have no friends because my ex chased them off long ago, she has borderline personality disorder. I don’t know how to keep living like this.

      Sorry for everything flowing together. I’m just really exhausted and struggling to make things coherent.
       
    11. all to gain

      all to gain Member

      Tinnitus Since:
      June 2019
      Cause of Tinnitus:
      dirty drugs
      Take the chance, see what happens. Then you can take it from there.

      My wife thinks I am suffering from tinnitus because I am depressed and that if I stop being depressed the tinnitus will go away. If only. It's not going anywhere soon.
       
    12. Daniel Lion
      Ape-like

      Daniel Lion Member Podcast Patron Benefactor Hall of Fame

      Location:
      SE Asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      You need a second opinion supporting your decision from an ENT surgeon, otolaryngologist (spelling), I have no spell check... be patient.

      Shame you couldn't talk to Dr. Silverstein directly, if you could, he would warrant a twenty hour drive to talk to. He's the bomb, a pioneering surgeon who knows his shit.

      Dr. Shulman I don't know anything about except that he prescribes benzos and is smart.
      You sound like you want this, you just want the blessings from another knowledgeable professional... so you need that second or third doctor consultation.

      The doctor who recommends the surgery, what's their track record, reputation etc... why are they so keen on the surgery?

      Family...
      You have found yourself in the middle of the perfect storm of shit.
      If your kids are 5 years or older they will be able to understand you are unwell.
      Avoid fighting, yelling, any confrontations.
      Tell your family you are unwell and avoid confrontation for self-preservation and legal reasons.
      If you can, lean on pop, lean on him.

      Your priority now is your health, and finding the answer to your surgery.
      Selah's health is first now... you are a loving dad, and that's not going to stop.

      Sounds like the wife has got you by the balls. Avoid confrontation, smug comments, avoid her as much as possible.

      If mom has any compassion, great, if she's mentally ill and can't be helped, bite your tongue and avoid her as well.

      Use me as a sounding board, get in touch with a few more doctors, and with member @GregCA and make an educated decision.

      Things will get better, they have to.

      Use me any time as a sounding board or to vent... dig deep, right now is the hardest part of your life and you are going to pull through... I am sure.

      Your friend,
      Daniel
       
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    13. AUTHOR
      AUTHOR
      Selah1281

      Selah1281 Member Benefactor

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Unknown
      Thanks Daniel, I really appreciate you talking with me.

      My surgeon wasn’t keen on surgery. I told him how bad my tinnitus is and he said if I wanted the surgery he would do it. So he’s being merciful I suppose.

      My surgeon's track record is great, but he’s majorly into cochlear implants, not tinnitus.

      The co-surgeon is a cranial surgeon specialist who also has a great track record.

      https://wexnermedical.osu.edu/find-a-doctor/oliver-adunka-md-53431

      https://wexnermedical.osu.edu/neurological-institute/researchers/daniel-prevedello-md

      They are both professors at Ohio State University.

      Thank you again to all you. I know you all are suffering greatly. Probably moreso than I am so taking your time to council me really means a lot.
       
    14. Daniel Lion
      Ape-like

      Daniel Lion Member Podcast Patron Benefactor Hall of Fame

      Location:
      SE Asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      Hell, that's two doctors... your doctor and Dr. Shulman not keen. Silverstein doctor, although not Dr. Silverstein, makes three not keen. You could try one more consultation, or leave it at that and listen to the professionals.
      Carry on for a year and then reassess.

      I think you got your answer friend, I wouldn't second guess it. You could try to get one more opinion, but that's already three doctors saying nay.

      Don't do the surgery, get one more consult... but the writing on the wall is saying no. They could all be wrong, but we're not doctors... get one more consultation to feel better, don't second guess these guys... I know you want a quick fix and are in pain... it's the nature of our affliction...

      Be kind to yourself... slowly figure out a plan for the domestic stuff... how old are your kids?
      Are they old enough to get it? Over 5 years old?

      Dude, I am broke, if I was cashed up, I'd hook you up tomorrow...
      I am an agnostic or don't believe in a god in the sky with a beard looking down at you... but I do believe angels, or the universe is on your side and you are going survive this shit...

      You are number 1 now, just look after yourself, lie, smile, endure the pain and get out to the woods or somewhere peaceful when you can. Write, cry, do whatever it takes... get your massages and try and chill your nervous system down.

      Stay in touch... be strong. Don't give up... and for shits and giggles consult with another doctor if you can find one. No surgery now brother... not after what you told me...

      OK, peace out.

      Daniel
       
    15. AUTHOR
      AUTHOR
      Selah1281

      Selah1281 Member Benefactor

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Unknown
      He wasn’t keen on surgery because generally they don’t operate just for tinnitus. They want more symptoms. They generally see tinnitus as a manageable symptom.

      Neither Dr. Shulman nor Dr. Silverstein's fellow have seen my CT scans and my osteomas. Also Dr. Silverstein's fellow didn’t say don’t get the surgery. That was just Dr. Shulman. I don’t think my surgeon would do the surgery if he didn’t think there was a chance it was the cause.

      Dr. Silverstein's fellow just said he hadn’t heard of osteomas causing hyperacusis.

      Sorry not trying to argue with you. I know you’re just trying to help.
       
    16. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      This was the same for me: my surgeon told be, point blank, that I shouldn't do my stapedotomy for the Tinnitus, only to recover hearing, because the odds of success for tinnitus was only 50%, while the odds of success for hearing recovery was 90%+.

      I did the surgery and recovered a good chunk of hearing, but no recovery from tinnitus.

      These surgeries aren't trivial. Gotta think long and hard about it, and get various doctor opinions.

      Good luck!
       
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    17. Daniel Lion
      Ape-like

      Daniel Lion Member Podcast Patron Benefactor Hall of Fame

      Location:
      SE Asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      Understood... I know you are not arguing... just trying to help brainstorm... maybe you need to follow your intuition on this and fax a CT scan for the other docs to look at. Sounds like you are in good hands.
       

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