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Testing VEMP and ECOG

Posted , 5 users are following.

jim79476
jim79476

My health care is through the VA in Montana. Very little understand of Meniere’s. They want to send me to the VA in Salt Lake but say I need these two test first. The VEMP (vestibular evoked myogenic potential). And ECOG (electrococheleography). I have already been diagnosed with Meniere’s by two local ENTs. 

Does anyone one have any experience with these tests they would share with me?

Thank you

0 likes, 16 replies

16 Replies

  • JMJ
    JMJ jim79476

    Posted

    Hi Jim,

    I have no experience with the tests that you mentioned. However, in the U.S., the tests  for Meniere’s typically include an MRI to rule out any other possible cause for symptoms, and audiogram.  The audiogram of an MD patient typically slopes right to left, indicating low frequency hearing loss.  Criteria for Meniere’s includes 2 or more episodes of vertigo lasting from 20 minutes to 24 hours,  and aural fluctuations in hearing and or tinnitus within 24 hours of the episode of vertigo.

    Personally, I have experienced and have certainly read on this site, a wider spectrum of symptoms than those listed above.  However, that’s how the medical community will typically approach the problem.   

     Wish you the very best of luck!

    Sincerely,

    J-

     

    • jim79476
      jim79476 JMJ

      Posted

      Thank JMJ for the information. Yes, I have had the MRI and I do have all the symptoms you mentioned. I have had two other hearing test and I have lost hearing in right ear. Just not sure why I need the other two test and can’t get an answer from people locally. 

      Thanks-again and best to you. 

  • JMJ
    JMJ jim79476

    Posted

    Hi Jim, 

    I was reading a study about VEMP and noted the following: “Bilateral involvement is seen in approximately one third of MD cases. Saccular hydrops appears to precede symptoms in bilateral MD. Changes in VEMP threshold and tuning appear to be sensitive to these structural changes in the saccule. If so, then VEMP may be useful as a detector of asymptomatic saccular hydrops and as a predictor of evolving bilateral MD.“  Do they suspect bilateral MD, or for some reason want to document your not having it, before sending you off to Salt Lake?  And doing an ECOG seems weird to me if they’ve already detected low frequency hearing loss on audiogram.  Hmmm.....I don’t know.  I suppose more information is always good, but not if it means holding off treatment that would be the same either way!! 

    I wish you all the best!

    Sincerely,

    J-

     

    • jim79476
      jim79476 JMJ

      Posted

      Thanks again for the information. The local DR’s don’t know the reason for the tests. Salt Lake is very difficult to communicate with. They are very busy and under staffed. What you are saying about bilateral MD makes sense but that was never passed on to me. I get the tests done this Wednesday but have to drive 230 miles round trip. This is cause for much anxiety as being in a car is problematic for me. Anyway much thanks for your input. Much appreciated. 

      Take care. 

    • JMJ
      JMJ jim79476

      Posted

      Good God....MD itself causes so much anxiety, but the journey to finding a solution seems to do nothing but escalate that anxiety.  I’m sorry you have to go such a distance.  I hope you’ve got rescue meds in your pocket at all times, in case of an attack while you’re driving?  Or perhaps you should take a small, minimally sedating dose before you leave?  

      Please let us know how it goes.

      J-

    • jim79476
      jim79476 JMJ

      Posted

      J-  Thanks so much for your concern. My wife is driving me, so that helps, and I have Valium I can take. I wish they could find a cure for this horrible syndrome.  I would give up the hearing in my right ear to stop the spinning and hrs in bed. 

      Thanks again,

      Jim

  • Reena2017
    Reena2017 jim79476

    Posted

    Hello Jim,

    I had the ECOG done in Detroit, Michigan and after that they diagnosed my MD. They had put a microphone in my ear to hear vibrations and to calculate and what percent my MD was. There was a reading for both left and right ear for dizziness/tinnitus and sounds see what % you are a t for MD. They said anything above 50% was considered a diagnose for MD. I hope this helps you but for me they're repeating this test and also doing the chair maneuver for next steps as my MD is getting worse. All the best!

    • jim79476
      jim79476 Reena2017

      Posted

      Reena, 

      Thanks so much for the information.  I really appreciate it. I am really not sure why they are doing these test as I have been diagnosed with Meniere’s by two ENT’s. I guess this is the VA protocol.  I am glad I have VA healthcare but it can be slow at times. I understand the VA in Salt Lake has a Dr. that has a much better understanding of Meniere’s. I hope so. 

      I hope you get the help you need also. 

      Jim

  • cormac1221
    cormac1221 jim79476

    Posted

    Hi Jim,

    I had an ECOG a few weeks ago. I had been given a probable diagnosis of Ménière’s based on my symptoms, but the doctors weren’t 100% sure because there are other ear problems that could cause the same symptoms. I like this test because it measures changes in the inner ear and allows doctors to diagnose Ménière’s objectively and definitively with solid data. The results did confirm a Ménière’s diagnosis, which made me feel better because it eliminated a lot of questions for me, even though it means I probably have some permanent hearing loss.

    The test itself wasn’t bad at all: plugs in the ears that emitted clicking noises, and electrodes stuck to the forehead. I think the whole thing lasted about 20 min. I fell asleep for part of it (I have 2 little kids at home, so I enjoyed the peace!).

    I haven’t had a VEMP done, so I can’t comment on that. I did do a VNG (videonystagmographic evaluation), which tests for vertigo and involves wearing clunky goggles that track your eye movements. That wasn’t quite as pleasant but still not too bad.

    Good luck with everything.

    • jim79476
      jim79476 cormac1221

      Posted

      Thank you for the information on the ECOG. That helps me understand why they are asking for these test. Maybe it is also a way for them to recommend certain treatment. Was that the case with you?

      Hope you are getting some relief. 

      Thanks again,

      Jim

    • cormac1221
      cormac1221 jim79476

      Posted

      Yes, after getting the definite diagnosis, my ENT started me on a mild diuretic. The feeling of fullness has gotten better since I started taking it, but my hearing hasn’t improved and I still have constant ringing in that ear, so it might be too late for that to change. I haven’t had much vertigo since my first attack over a year ago. All things considered, I feel a bit lucky that things aren’t worse.

      Good luck,

      Cormac

    • jim79476
      jim79476 cormac1221

      Posted

      Cormac,  I am glad you are getting relief from the vertigo. I know the hearing problems can be annoying but to me it is the vertigo that is the nightmare. 

      Thanks for for your reply. 

      Jim

    • JMJ
      JMJ jim79476

      Posted

      Hi Jim,

      In terms of treatment, I failed all conservative treatment.  As a result, I spent a year on the couch, sick as a dog with vertigo, and  hospitalized once for an especially horrid episode that resulted in dehydration and my losing my ability to walk.   Like you, it wasn’t the hearing and vertigo that was my #1 concern, but the vertigo, nausea and vomiting.  I really wanted to die.  Thank God, my local ENT threw up his hands and recommended I see a specialist at Loyola.  After a couple of  monthly intratypanic steroid injections, the frequency and intensity of vertigo attacks began to lessen.  After about six months, they vanished.  I felt amazing: Free of vertigo, free of imbalance, dizziness and brain fog.  Then a few months later, I got the flu and pneumonia, and for some reason, it resulted in a new round of vertigo.  I went back to the injections, which worked wonders once again, only this time, I also regained much of my hearing, and my tinnitus was reduced drastically.  My doctor explained that there’s a slow but cumulative effect that happens with regular intratympanic steroid injections, on the cellular level.  It’s more than a one time inner ear anti-inflammatory bomb.  So now I receive them on about an every 10 week basis, with my goal being every 3 months (or longer, if I find I’m able to handle it.)   I figure an injection every 3 months, which takes all of 2 seconds with a 10 minute rest afterward, is well worth it in order to live vertigo-free. I know a lot of people object to a long term treatment like that, but honestly, since it’s a long term disease, I have no fantasies about a silver bullet that will make it go away forever....at least not at this point.  I’ve tried all the supplements and all of the natural herbs, oils, lotions, and potions....and this has been the only thing that has worked for me.  

      So, it’s just another thing to read up on, as you go on this journey. And of course, something to suggest to your doctor.  Often times, doctors who are not entirely familiar with MD, will go right to Gentamycin injections, which have significant side effects, and with most, a permanent dose-related hearing loss.  I feel that steroid injections should really be considered before going that route, as they have absolutely no side effects, and have a fairly high rate of success when administered on a regular basis.  (Some doctors give just one shot, and then if there’s no response, progress right to the gentamycin or some other more aggressive treatment.). 

      If you ever get to the point where you’re discussing that option with your doctor, and he’s not familiar with the protocol I’m describing, I’ll be happy to share my doctor’s name and number with you via this system’s private messaging option.  I know he’s spoken with other doctors in the past. 

      Again, best of luck to you on Wednesday!

      J-

       

    • jim79476
      jim79476 JMJ

      Posted

      J-

      Thank you so much for the treatment information.  When we get to that point I will mention your treatment to my Dr. Again I live in Montana so pretty sure will have to travel for treatment. Not sure what the VA will cover. Have taken prednisone and it helped with the vertigo, but many side effects. When I stopped the vertigo returned. 

      Much thanks. 

      Jim

    • JMJ
      JMJ jim79476

      Posted

      Hi Jim,

      Just want to clarify, and then I’ll shut up!!  I promise!  LOL!!  Oral prednisone is definitely brutal!  But when it’s injected into the inner ear, there are no side effects.  Essentially it gives your inner ear a quick bath.   There’s a company trying to develop a longer lasting gel-like prednisone that will stick to the structures of the inner ear for a longer time, but it’s just not out yet. 

      Anyway, I just wanted to clarify that this is not like getting a systemic shot of prednisone.  Your ear drum is numbed, and then the the injection passes through the ear drum and targets the inner ear structures.  And it’s not painful at all.  

      Okay....No more from me! 🤐

      J-

    • jim79476
      jim79476 JMJ

      Posted

      J-

      The more information the better as far as I am concerned. So thank you for passing on your experience.  

      Glad and you are doing well. This is a horrible syndrome to deal with. 

      Jim

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