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Deteriorating Hydrops, sac decompression, anything else???

Discussion in 'Your Living Room' started by sixtus, May 5, 2019.

  1. sixtus

    sixtus New Member

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    Feb 14, 2019
    Hi, wondered if learned members could offer any assistance.

    Got what appears to be cochlear hydrops in left ear 5-6 months ago. Deafness and tinnitus lasting 1-2 days but no vertigo. I posted a while back and problem now is attacks went from a couple weeks frequency, to 1 per week, now 3-5 per week, aka they are pretty much cycling continually.

    MRI/CT/Hearing tests all good...but my ENT is concerned the rapidity of these attacks will take a toll on my hearing shortly.

    All interventions so far have failed to slow it down. Strict low sodium diet, diuretics, serc, triptan( a migraine med) all useless.

    I was told next thing on the ladder is a "sac decompression" apparently 70% chance of success, 2% chance of deafness, some chance of relapse?

    Again I don't get vertigo so laby and gent perfusion not indicated and I haven't had hearing loss(yet...) so taking the plunge with this is a big deal.

    1.Is this radical surgery?
    2. Anyone had it or have stories to report?
    3. I thought if it was that good more people would be doing it?
    4. Any other last ditch meds I can try? I havent looked at herbs/supplements yet btw.

    About the only thing that stops the attacks is sometimes if they are just starting I do an intense cardio workoout, I have actually dampened a few attacks this way. Wondered if this sounds more migraine/vascular?

    Anyway, main thrust of the thread was the sac decompression, thanks for any thoughts on it.
     
  2. FNC

    FNC New Member

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    Apr 18, 2019
    Some people on this forum have had success with anti-virals if you haven't tried that. If blood flow helps maybe try the John of Ohio protocol as it is supposed to increase inner ear bloodflow.

    I was reading about Endolymphatic Sac decompression and there is a newer version of the surgery called Endolymphatic duct blockage which looks promising but i think is still pretty experimental. I think very few people have had that done so far, though. I've never heard of either being done without vertigo, though. Did they say it would reduce deafness?
     
  3. June-

    June- Well-Known Member

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    Have you tried antivirals (acyclovir, valtrex, or famvir)? I have cochlear hydrops in my only hearing ear and was not eligible for destructive measures. Antivirals sopped the progression of the disease, returned all my lost hearing in the lower registers (not the vey highest frequency loss) and reduced tinnitus to almost nothing. I also took allergy shots. Try antivirals if you can. My ear functions normally now. (Things that did not work for me, lo sodium , diuretics, steroids, hearing aids, etc etc. )
     
  4. AmyLeigh

    AmyLeigh Member

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    Hi Sixtus - I did the Sac Decompression surgery in February. It did not work. The surgery itself was ok - I was out of the hospital by the afternoon. Recovery took about a week (killer ear pain for the first 2/3 days). I had no tinnitus, vertigo, etc. for about six weeks then it all came back tenfold at the end of March. I did some research before the surgery and it's more like 55-60% chance of working. I thought it was still worth a shot though as it's not 'destructive.' I don't really regret having tried it (although I'm still paying for it and it didn't work, so that's frustrating). I'm glad I can check the box as something I tried in my search to find lasting relief (as opposed to forever wondering if it would work or not). But yea - at the end of the day it was a giant waste of my time and money :(
     
  5. hamhamhamha

    hamhamhamha New Member

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    Dec 9, 2015
    Hi sixtus

    I was first diagnosed 10 years ago by an ENT specialist with cochlear hydrops. Everytime when I had an attack, I get extreme fullness in my left ear + loud tinnitus. Although I have not had an episode of vertigo or
    loss of hearing, the fullness in my ear made me pretty debilitating.

    Similar to your situation, my symptoms also worsen, My worst episode lasted a year and a half where I suffered 2-3 attacks each week and each attack would last for at least 2 full days. During this time, I’ve seen a dozen of different ENTs and tried everything from extreme low sodoum diet (200mg of sodium a day) to antiviral, steroid, JOH regimen, Chinese herbal medicine, diruetics, Serc and nothing helped! Not even a bit of relief. I felt really hopeless and was on the verge of giving up. Then I asked my ENT for a referral to see a neurologist in UCLA. This was when my life changed. The neurologist suspected I have migraine and was prescribed Gabapentin. I took it 3 times a day for a week and and I’ve only had 2 attacks since mid 2017 to now. For the last 2 episodes I had, I would resume taking Gabapentin again 3 times a day until the symptoms are gone (one week tops)

    I would really encourage you to give neurology a try. When I asked for my ENT doctor for a referral to see the neurologist, she said I could give it a try but based on my symptoms she doesn’t believe I am suffering from migraine. I was also skeptical but I felt all the treatments I tried for cochlear hydrops did not relieve any of symptoms so might as well just see one more doctor before I give up.

    Hope you feel better soon .Please let me know if you have any questions
     
  6. sixtus

    sixtus New Member

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    Feb 14, 2019
    Thanks for the replies guys.

    I havent tried anti-virals. The ENT's this side of the globe( Australia) dont seem to be on board with it. I asked them and it was a firm shake no. Its possible I could find one that is, if its worth pursuing. Can anyone offer some anecdotal ideas of dosages so I can mention it the next time I go in?

    Thanks for your operation review Amyleigh. Sorry to hear it did not work for you. When you say everything returned tenfold, do you mean your tinnitus and vertigo is now permanently far worse than pre-op? Or did it return to normal pre-op levels again?


    My situation is peculiar in that I am hugely lucky I don't seem to get vertigo, but also makes treatment less obvious as most things surgical are aimed at true vertigo type menieres.

    I'm worried about losing my hearing but moreso worried I am not doing enough to prevent it. I can almost handle loss as long as in future years I know I did everything I could. Might sound strange but anyway..
     
  7. sixtus

    sixtus New Member

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    Feb 14, 2019
    I think I am in the same boat as you. I had considered a Neurologist but then was thinking why bother. You have inspired me to give it another shot. At least I can say I have covered off all the options then.

    Can I ask what sort of Neurologist you saw, do the 'normal Neurologists' handle this side of things? Funnily one of the ENT's I saw was an in-training Neurotologist and she mentioned migraines as well. However she didn't go any further with it. I can find Neurologists easily enough, as long as inner ear migraines are something they all might be interested in.
     
  8. hamhamhamha

    hamhamhamha New Member

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    Dec 9, 2015
    Hi Sixtus,

    I will PM you the details to my neurologist so you can look for a simile one in austrlia (not sure if it’s against the rule to post publicly on this forum)

    I don’t think she is a general neurologist since I always need to wait 4-6 months to see her from the day when I called for an appoitment

    I just had a follow up appointment with her last month. She said sometimes it’s really hard to find a migraine medicine that will help so please do not give up. She also said the migraine medicine is better not to be used as a preventive medicine to be taken regularly because your body might get used to them and lose effects when you actually have an attack.
     
  9. hamhamhamha

    hamhamhamha New Member

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    Dec 9, 2015
    Ah! My PM to you is currently pending moderator review. Please check your inbox later.
     
  10. June-

    June- Well-Known Member

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    It was my primary care doctor who first prescribed the antivirals for me because if you do not have kidney or liver issues they are a very low risk drug, much less problematic than steroids that are often prescribed for hydrops though their helpfulness is usually temporary. The average ent here does not prescribe antivirals for this either but some do. None of the other drugs they prescribe as standard treatments are proved to work for this either. They prescribe antivirals for cold sores for heaven’s sake. As my primary care doctor said, if you want to tey it, i will prescribe it. There were no guantees but it worked for me as it does for many. You might ask a gp and say you want to make sure you have tried everything before you start having doctors do destructive procedures. Most ents are surgeons first and their mind goes there first. Are you a traveler? I have known australians who go to the House Ear Clinic in LA. If you do, see Dr Jennifer Derebery. She prescribed famvir for me after my family dr worked with acyclovir. They both work.

    Well good luck. You will find an answer.
     
  11. AmyLeigh

    AmyLeigh Member

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    Hi Sixtus - it came back with more vertigo after the surgery. Although with the nature of this disease it's hard to tell if it came back 'worse' because of the surgery or that's just what it was going to do anyway. Who knows.

    I also advise finding a doctor (I'm just using my primary care doc) to let you try antivirals. Search this forum for "antivirals" and you will get lots of input in dosage, brands, etc. Like someone else said above - it's low risk and works for a lot of people - so definitely worth a try. My ENT was against it too, but my PCP said he would try it with me because the benefit outweighed the risk in his mind. He's doing bloodwork on me every 6 months to monitor my kidney function, but that was more at my pushing to do so than he thinks is necessary.

    I hope this helps!
     
  12. Joney

    Joney Active Member

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    Apr 12, 2019
    What are the risks? My functional medicine doc wouldn’t prescribe them for me. He too said that the risk wasn’t worth it. But I thought he said this because he would rather go the natural route. I am taking l-lysine 3000 mgs spread out under JOH protocol. I just started last week, so I know there is a long road ahead. Hoping this or one of the few other supplements helps.
     
  13. JenLKN

    JenLKN New Member

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    Apr 23, 2019
     
  14. AmyLeigh

    AmyLeigh Member

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    According to my PCP the only risks involve kidney function and are really only an issue if you have troubled kidney's to begin with. Look up "Dr. Gacek" in the search here for a study/report he did on Meniere's and antivirals. Give that to your doctor and see what he/she says. Antivirals have helped a lot of people on this forum, it's worth finding a doctor who will work with you.
     
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