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How do you know if the gentamicin has worked?

Discussion in 'Your Living Room' started by AnneT, May 16, 2019.

  1. AnneT

    AnneT Active Member

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    I understand that some days after the injections you’ll feel whoozy or off balance, and so you’ll know that the gentamicin has taken at least some effect.

    But how do you know if the vestibular nerve is completely dead?

    Do you just wait to see if vertigo happens? (I’m not keen on this approach because I’ve had remissions before, so I’d still have the wondering and anxiety.)

    Do most people post-gentamicin get another VNG to see? If so, how long do you have to wait for the eardrum to heal up?

    I’m seeing the Neurotology doc May 21. Hopefully she’ll have some good answers but in case she’s not a good communicator... I want to know from my tribe mates what’s your experience, or what you’ve heard from your doctors.
     
  2. Pupper

    Pupper Active Member

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    AnneT Mother of Antman,

    You are the ace worrier of the 21st century. Holy crap. You'd better not talk yourself out of a gent injection. You have the opportunity to have one of the most successful and easiest treatments that COULD solve your dizziness. You should be thrilled at the prospect.

    As I'm sure you are in a way.

    To answer your question in my case. I didn't feel much different after each of my 7 injections. Either immediately afterward, or in the month after each. The only reason I knew something was happening is that a few times I'd be looking at something and it would start to do a flim-flam movement. But it only happened for a few seconds with me. People talk about this phenomenon.

    Umm, what else. The hole in eardrum seals back up like immediately. Or is supposed to.

    I drove myself home after each injection.

    Not sure about VNG tests. I had one during my injection cycle because my dizziness wasn't getting better. A VNG test is good because it will show (obviously) if gentamicin works for you, or you're resistant to it (like I was). I think you deserve clarity that way and I hope Cananda allows you to have a follow up VNG sometime in the next 200 years.

    So, on the 21st, are you just going to talk to the Dr. or is it expected you'll actually have an injection that day?
     
  3. AnneT

    AnneT Active Member

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    Hi Pupper Father of Puppy

    No don’t worry! I’m not talking myself out of gentamicin! I absolutely want it. like, yesterday. I just desperately want to KNOW, to have total confidence, if/when my bad nerve is gone.

    I’ve read about people doing well with gent for a year and then the vertigo returns. If I’m cured, I want to know, so I can shake off some anxiety. And to be able to drive without fear of a drop attack.

    And if my nerve is resistant, then I want to know ASAP so I can move onto surgery.

    I doubt Dr Hwang will do the deed during this first visit with her ... but wouldn’t it be lovely if she did??

    Lol yes they’ll get to me sometime in the next 200 years or so. I’m envisioning Becky the Booking Clerk tracking down my gravesite to let me know the details of my upcoming appointment with the surgeon. (I have a friend who showed up for her knee MRI on the right day... but wrong year.)
     
  4. Michael68DC

    Michael68DC New Member

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    Hi Anne - I have had 3 gent injections so far and in my case I did a VNG test after each one. Before the first injection the test indicated about 35% vestibular function, but now it is down closer to 5%, so my observation is that the test is a good/clear way to indicate effectiveness of the treatment if you are able to get it. My understanding is that having a noticeable reaction is exactly what you want, even if it is unpleasant, because it is evidence that the medication reached the intended part of the inner ear and that it is having the desired affect. The logic being that if you become dizzy after treatment, that indicates that you killed balance function, disturbing the balance between left and right, and the dizziness is your brain trying to compensate.

    The good news is that my treatments appear to have done what they were intended to, but the bad news is that appears not to be the root cause of my dizziness (non-vertigo) or head fog. Having *nearly* eliminated the vestibular function I would have expected some improvement but it has gone the other way. I am scheduled for a laby on May 30th but I am talking with my doc now to see if it makes sense to do such an invasive procedure to eliminate the last ~5%.

    Also, my understanding is that the gentamicin is not actually killing the nerve, but the hair cells that would otherwise transfer information from the vestibular system to the nerve.

    I didn't drive myself home after the procedure, but I was able to get a cab/Uber without any assistance. I actually hired a medical transport service for the first one because I didn't know what to expect, which turned out to just be a $55 cab ride home, but better safe than sorry. Once you get the injection you sit still for 30-60 minutes to let the medication saturate the inner ear, so you do have a good amount of time to 'chill out' after the procedure. I don't know if the medication works immediately for anyone, so it may be a good idea to plan to not be the one driving.

    My doctor used a numbing agent on the eardrum and I can tell you that after that I didn't even know that he inserted the needle, which was amazing. When this first happened to me I got a steroid injection with no numbing agent and that is a sensation I could do without repeating.

    There is a chance that you could actually have the first injection the same day, of course depending on the patient load. It might be an idea to call the office and ask if they could at least try to schedule enough time for that if you and the doctor decide to move ahead. On a previous visit to another ENT, he said "It only takes a few minutes, if you have someone to drive you home we can do one right now." So, it appears not to be something that requires much planning or preparation.

    One other thing I can share is that I was told that the strongest concentration of gentamicin comes in is 40%. My doctor told me that he usually cuts it down to 30% because it can burn at the higher concentration. I wanted to maximize the effectiveness so I asked him if it was 'screaming burning' or 'uncomfortable burning' and he said it was more uncomfortable. I went for the 40% and it definitely stung when it went into the inner ear but I can say that it was tolerable and only lasted a few seconds. I also opted to stay on my side for 60 minutes vs. 30 just to try to maximize the penetration.
     
    • Informative Informative x 1
  5. Pupper

    Pupper Active Member

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    Great post Michael.

    How's the hearing in your bad ear? Why not consider a VNS before a laby? I'm sure you've thought of everything, I'd just like to get your thinking. "Such an invasive procedure." Yeah, I'll say, they're removing your inner ear.

    You're so lucky the gent injection didn't hurt. My doctor shot me the numbing agent but it didn't have any effect as far as I could tell. The gent shot really hurt.

    And he only had me lay on my side for 10 to 15 min after. Lots of differing opinions on that.

    Agree, it's not a long procedure and the clinic I went to seemed to be able to administer them on the fly. So I think there's a good chance AnneT will get the gent on her first visit.

    I hope you'll keep us posted on your journey. Especially since I'm in a similar situation as you. Gents and VNSs killed the vestibular function in bad ear, but I'm still dizzy (unsteady). So I'm very curious what the outcome of your laby will be if you get one.
     
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  6. Pupper

    Pupper Active Member

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    Michael, I see in another thread from some time ago that you already answered my question about your hearing. Sorry.
     
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  7. AnneT

    AnneT Active Member

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    My looooong awaited appointment update:

    Dr. Euna Hwang was very nice, young, seems up to date. She'll try to get me in for a gentamycin injection sometime in the next 2 weeks. She uses phenol for freezing the eardrum, and 40%? or 40 mg/mL? solution of gentamycin. She expects the off balance effects from the injection should be most intense sometime in the 2 weeks following that.

    Her usual approach would be to just wait and see if the vertigo recurs after the injection. If it does, we can do more shots - I think she said about a month apart, but my husband says she didn't say timeline. If some time passes without vertigo, I've asked her to do the vestibular testing again to see if the nerve is good and dead - if the vertigo is gone, I want to know that it's gone! (She listened and understood that I've had long remissions before, and don't want to get caught in the Catch-22 of being well for awhile, only for vertigo to return, and me to be dumped back at the bottom of the waiting list again.)

    If the shots don't work, she can do laby surgery that would eliminate the vertigo (pretty much 100% for sure) but would also eliminate what remains of my hearing on that side. She says her surgical waitlist isn't too long.

    So it's still a process ahead of me. In some ways I wish she would just go immediately to the laby, for the 'sure thing', and get on with my life. But if the injections can stop the vertigo, and leave me a bit of hearing on that side, I guess that's worth trying.

    She warns of the "up to 50%" chance of going bilateral. If that happens, she'd send me either to Dr. Phillip Park (ENT who does surgeries with neurosurgeons) for VNS, or the Edmonton "where they do more of that". Cochlear Implant would only be offered if I get to severe bilateral hearing loss, but can be done post-gentamycin, post-laby, etc.

    She, and I, are perplexed by my normal VEMP in light of all my symptoms and clear VNG showing less than 50% function on the right, but perhaps that's a question for a different thread.

    It was so good to have hubby in the appointment - he's a family doc, too - taking notes, making sure I don't get off topic, asking questions that I forget to ask.
     
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  8. Cheryl

    Cheryl Member

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    Congratulations, Anne, on getting the ball rolling. Fingers crossed that the gent injections work for you.

    Could you explain a little bit more about going bilateral and needing a VNS? Does she mean going bilateral after gent has destroyed the nerve in your current MM ear? VNS instead of a laby to preserve hearing in the second ear?

    I became bilateral after a VNS. The vertigo attacks were less frequent in the second ear. They were also slower and didn't last as long, 4-5 hours as opposed to the 12-14 hours with the first ear. I never even considered a VNS in the second ear. Fear of the unknown. I have profound hearing loss in one ear and severe in the other. Thankfully, I haven't had a bad vertigo attack in about four years.

    Hope your doctor can get you in soon for your first injection. I also hope you're relieved and a little less anxious knowing there is a plan in place.
     
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  9. AnneT

    AnneT Active Member

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    I think you read me right. Being unilateral, im just not too keen on the complexity of a VNS. But if I became bilateral, then I’d be more open to VNS in hopes of preserving my hearing while killing the vertigo (especially if it were to get to the drop attack stage like I’m in now.)

    Yes I’m relieved to finally have someone local that I feel I can work with. A bit nervous of course about getting through the procedure and the adjustment afterwards. But this forum is such a wealth of info and support... not sure where I’d be without it.
     
  10. Pupper

    Pupper Active Member

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    Glad your appt went well AnneT.

    I guess when deciding on Gent, VNS, or Laby much depends on how much hearing is left in your bad ear, or how important social hearing is for you. For me, it's very important. And going bilateral is a real possibility for all Meniere's sufferers, (i.e. almost total loss of hearing down the road). But yeah, if you're so entirely sick of being dizzy, one can understand if you'd take a risk on the hearing at some point.

    Keep in mind that Gent doesn't kill the nerve like, say, a VNS. It does something to the cells or hairs. I can't recall details now. So it's "common" to need more Gent injections later. And with that in mind, I don't know how important or useful follow-up nerve testing is. But yeah, I'm sure you'll get a least one.

    Glad you're on the sensible track. I wish I'd had a partner who was a doctor on all my appointments. That's so great. As for recalling what a doctor says, some people press record on phone and toss phone in purse.

    A bit from Dr. Hain on Gent:

    "A very serious problem - drop attacks from Meniere's - seems to respond very well to low dose gentamicin. Wu et al (2019) reported that "In the study, 92.31% of refractory definite MD patients with DAs achieved satisfactory control of DAs after Gentamicin treatment.""
     
    • Optimistic Optimistic x 1
  11. AnneT

    AnneT Active Member

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    Thanks Pupper!
    Yes social hearing is super important to me. I did a values exercise once, and came up with that engagement is my highest value. Which reminds me... my audiologist gave me access to online lip reading training- I must do that! I’m already pretty lost verbally in noisy situations- it’s amazing how bad it is considering I still have one good ear.

    Oh yeah - re: gent and hair cells vs nerve death.

    I’m going to make my hair cells read Hains’ article. “You see, little cells, we are going to be in the 92%, ok? Because we like to go for a car ride, right? No more spinning and falling down for us!”
     
  12. AnneT

    AnneT Active Member

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    Pupper
    Maybe I didn’t answer about my hearing. It’s down to moderately severe loss - I think around 60-70 dB on my bad side, word recognition in optimal setting 44%. In noisy places I hear nothing on that side, even with my hearing aid. My echolocation is gone. So it’s kind of borderline whether it’s worth saving.

    But I’ll give gent a “shot”.
     
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  13. Clare

    Clare Active Member

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    To me, word recognition at 44% and hearing at 60-70dB seems like you would notice a significant difference if you lost that. I hope the gent treatment can preserve your hearing on that side -- it's a fine line to kill the vestibular hair cells without killing the cochlear hearing ones. It is worth doing what you can to save it, and you're smart to try the gent before jumping right into labyrinthectomy. Good luck, Anne.
     
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  14. AnneT

    AnneT Active Member

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    Thanks Clare!
     
  15. Marta

    Marta Member

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    Anne do you know the date of the injection? Keep my fingers crossed for you! Hope you have been feeling good recently
     
  16. Pupper

    Pupper Active Member

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    In my experience, it seems to me, when you've lost a good amount of hearing, that the line between saying "what?" alot, and "what?" not too often, is very thin. So if one has little hearing left in bad ear, it's still helpful. I'm just talking about socializing. Not listening to music, watching TV etc.
     
  17. AnneT

    AnneT Active Member

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    Marta
    I haven’t heard yet... I make sure I have my phone with me everywhere I go lol.

    Pupper
    Ya, even one on one, if the speaker’s head is turned away from me, I hear some strange and amusing things. I should keep track of misheard phrases and start another Fred! What? Thread.

    And in noisy environments I don’t even hear if a person is speaking to me from my right side. My husband is my Hearing Dog and nudges me to tell me the waiter or whoever asked me something. I try to order food that won’t come with follow up questions and options- how well do you want that done, what dressing, fries or salad etc.
     
  18. Marta

    Marta Member

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    Anne do keep your Phone with you and make sure it’s charged

    I am an atypical patient when it comes to MM and hearing . I should have lost my hearing long ago considering how many severe attacks I had before the surgery. The loss is quite insignificant. But ... still.... if I were to have vertigo again (attacks lasted up to 22hrs!) I would not hesitate to ask for a laby. I believe that deaf people can be happy and I am sure they are. I was the opposite when I had one attack after another.
     
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  19. AnneT

    AnneT Active Member

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    I still hadn’t heard about my gentamicin injection that dr. Hwang wanted to do by June 4. So I phoned... the general ENT clinic had no paperwork from the Neurovestibular clinic... a whole 2 floors away from each other. Sigh.

    Anyway... it was good I called... I’m FINALLY booked for gent June 5.

    I still have this gut feeling I’ll be winding up with a laby eventually and wish I were offered the direct route...and am scared that this gentamicin route will be unnecessary suffering. But I’m trying to focus on the good outcome stories and studies, and remind myself that if one or two gent shots kills the vertigo and spares me surgery (especially in this what-the-fuckery fraught department!!) and a bit of my hearing, it’s worth another few months of adventure and experimenting. I guess.
     
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  20. Clare

    Clare Active Member

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    If it's any consolation, any balance retraining you go through because of the gent will make a laby recovery easier. ;-)
     
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