I agree that this is an excellent post. When everything has been tried....and then failed... the only way to "fix" a MM ear is to dumb it down or kill it off. The success rate of low dose gent is very high. And nothing to lose since you can always surgically take out the ear. Either way once you kill it and the other ear compensates with balance you are in good shape. When you kill off an ear you cannot have the spins which is just misinformation to the brain....after a laby or total gent destruction (if you have to go beyond low dose) there is NO information to the brain....so no spins. Good post. Good solid info. Thanks.
Marc, your post is exactly the information I have been looking for. My ENT has proposed doing a gent injection when I see her in two weeks. I was concerned about what the post-injection experience would be, when I might be able to drive again (I can't now), and how bad it might be to have my kitchen remodeled at the same time. I am deaf in my left ear but am told I have substantial vestibular function there, even though it's been 17 years since first diagnosed. I've already started with a vestibular therapist to begin building resilience. After reading your post, my sense is that in a few months I will be wondering why I didn't get gent much sooner. Thanks for giving me hope and reducing my anxiety about this procedure.
Clare, I hope it works for you. You probably already know this, but do keep in mind that the general thought is that if gent doesn't work after 2 or 3 injections, than it's probably not going to work. I mention this to save you time.
Pupper, thanks for this heads-up. I saw my doctor today to go over the most recent VNG (air) tests. The tests had several technical errors which prevented getting much information about my bad ear, but she was confident my right ear remains good. So she offered a gent injection on the spot. My takeaway after an intensive discussion with this ENT who has been caring for me well more than a decade, is I still could not get comfortable jumping into the gent, so I refused the injection for today. I'm still a little shaken by the VNG eardrum puncture and the sketchy VNG tests from the audiologist, so I'm considering a second opinion as a way to alleviate some anxiety. As I'm still having some 20 rotational vertigo episodes a month, there is probably no solution other than destructive treatment. But it would be good to hear another view on the recommended treatment protocol, recovery expectations, side effect risks, and quality of life implications. Or perhaps I am being abnormally cautious. Before this flare started up in January, I was about to jump into a significant and long overdue kitchen remodel, but now I am thinking that it would be best to focus on making the bathroom safer first (getting rid of the unsafe combo tub-shower) before having the gent injection. The plan would be to first fix the bathroom, then have the destructive treatment, and after some balance recovery do the kitchen remodel while vertigo-free, hopefully clear-headed enough to make decisions, and able to drive to places for material selections, etc. I feel a little lost in the land of no certain answers, no good options, and a lack of magical unicorns.
I think you so. You're having 20 rotational episodes a month and refuses an injection. I think you're falling into the trap that I did at the beginning. "But what if THIS?!...But what if THAT?!" There were no perfectly pristine options so I chose no options and just prolonged my suffering.
You're probably right, Pupper, and I appreciate the feedback. I'm still gun-shy from recent experiences with this clinic, and could not get comfortable with the information I was getting on Monday. I realize there isn't much choice about the next step in treating the vertigo.
Just a followup... it's almost been 4 years since Gentamicin changed my life. For those of you on the fence, I urge you to give it serious consideration. Some hearing loss is a possible and I should say probable outcome, but removing the threat of vertigo is a game-changer. marc
Hey, just wanted to say that my doc was the opposite. He said most people take 3-4 injections before it starts to work. I did 5 shots, a week each apart. After the 4th it was working but went ahead with the 5th one just to make sure. It's been almost a year and a half and I've had no spins since. This thread gave me the confidence to go ahead and get it done, so wanted to say thanks Mbach!
Mbach, After your first injection were you able to drive? I do not mean the day off, but the few weeks after? I had Endolymphatic Sac Decompression surgery 6 months ago and am now startin* to hav3 some movement again and dizziness. I am thinking I will try a low lose gent injection next.
Yes, after the process of balance compensation takes place, you should have no issue driving or doing anything else. I'm sure this is different for everyone, but I would say a couple of weeks should be fine. marc
I have MD. I was first diagnosed for the House Institute about 7 years ago. Dr. House prescribed a diuretic as well as BetaHistine. The medication did not work until I gave up both caffeine and alcohol. For about 6 years I was vertigo free until early this year. My episodes were coming about once every 3 weeks or so. My doctor in March gave me a series of 3 steroid injections in my left ear and it helped for awhile. The episodes were about once per 6 weeks or so up until about a month ago when they started coming once a week. The doctor prefers to do the shunt surgery but I am leaning to wanting the Gent injection and by judging from the success many of you have found, it gives me hope. My hearing is already very compromised in my left ear but perfect in my right ear. I have a VNG balance test ordered for next week to determine how damaged my balance nerve is in my left ear. That will go a long way to determine how the balance compensation will be after the injection. I am scared that the time after the injection will be intense and I will be very woozy, light headed, and feel very off until the balance nerve in my right ear takes over. May I get some of you to help me understand how bad you felt after the Gent injection and before you began to feel normal again? Can you give me an idea of timing and intensity of feeling badly? Can you go about your life on a day to day basis? Can you work and be social? Does life stop for a period of time after the injection kicks in? I am scared of the next vertigo attack and I am scared of the options of either the Gent injection or the shunt surgery. Please help. Thank you all and my best to all of you to continue with your success. I want to be you some day.
Hi - a couple of other questions and some clarification. I hear that Valium helps with the vertigo episodes and with helping after the Gent injection. A friend of mine who had the Gent injection about 7 years ago told me that he felt off for about 2 months after the injection but said Valium helped on those bad days after the injection. Has anyone else found solace in Valium when needed? In addition, my vertigo episodes last a minimum of 30 minutes and a maximum of maybe 2-3 hours. I try and sleep when I have an episode. Depending on the severity of the vertigo varies how easy it is for me to sleep. But almost always when I wake up the vertigo has passed. I generally feel sluggish after an episode for the rest of the day but the next day I do feel normal. Thank you for any help you can give me.
Very helpful thank you! It makes me less scared to try it, if offered. And helps me be brave to go through the nasty vestibular testing again. Yuck.
Had my first gentamicin injection today after years of spins and vomiting. Already had sac decompression surgery and intratympanic steroid. Currently feel fine. Worried it hasn’t worked for me
Nikko you most likely won't feel anything for a few days or more. Once you start feeling like a drunken sailor you know it is working. This feeling will last for a few days and then slowly it will settle down. Once you are feeling steady on your feet you need to walk as much as possible. Walking will help your brain adjust to the killing of the vestibular nerve. Walk walk walk believe me it makes a huge difference. Good luck!
Unfortunately first gentamycin had no effect so had another yesterday. Automatically swallowed immediately after and felt it drain down eustachoan tube. Anyone else had that and found it still Worked ????
Nikkio Did you let your doctor know that it got swallowed away? Just wondering, if that happens to me, whether they’d do a second dose while I’m there.
