Man, I know you're supposed to downplay the pain of stuff online so people don't get scared into not having them. But there's no way around it, having a needle stuck in your ear HURTS. And that supposed "pain killer" they flood your ear with before the needle goes in? I don't think that helps diddley. Painkiller or no painkiller, it still feels exactly what you'd think a needle piercing your inner ear would feel like. (Not that I've got the guts to tell him to not use the painkiller.) This time when he sticks it in, as a psychological way of tricking myself into thinking it doesn't hurt so bad, I might just say "OHHH YEAAHHH, FEEELS GOOOOOD." But I'm afraid he might laugh and jerk the needle.
I'm still getting the VNS in mid September. But, my spinning episodes have returned (two in the last 10 days), and I want to try and keep them at bay until my surgery. So I got a fourth gent injection today. According to my MM calendar graph, the gent barely helps my daily dizziness, but gent does seem to have significantly reduced my spinning episodes (or maybe the shunt surgery did that, or a combination of the shunt and gent). Hard to say. Anyway, it seems the nerve cells grew back enough to start sending bad signals to the brain again, causing spinning episodes. So I went in for what they call "a touch up" gent shot. Who knows if it'll stave off any more spinning. We're all just kinda flying blind here. Including our doctors. (Note: I don't want to discourage anyone from Gentamicin injections. They haven't done much for me, but according to the statistics Gent works for about 70% to 90% of people. I just wasn't one of the lucky ones.)
Also, each Gent injection hurts less than the last. The one I had today, my 4th, hurt MUCH less. Not sure if you just gets used to it, or the ear tissue actually builds up a toughness. As he shot me, I did manage to slip in a "ahhhhh, feels sooooo gooood". He chuckled, but kept the needle still, like a pro.
It does hurt to have a needle through the ear drum, but I had a retinal edema and had to have a needle in the back of the eyeball....now that is real pain!!
I had a couple of steroid injections in one ear. The first one did hurt a bit, but I didn't feel the second one much. I think because the ear drum hadn't healed he could just go ahead and poke the needle in the existing hole.
It's the 5th day after my fourth gentamicin injection. At one point during the night I heard a few pops and noises in the ear. And this morning I noticed a white, odorless discharge. Which I'm guessing is puss? Any ideas of what might have happened? Am I slowly dying?
I had 5 shots this year, each a week apart. I'd usually have some weird popping/crackling sounds for the week after having a shot. Never had any discharge though! Hopefully its nothing to worry about. And I didnt feel much pain during the injections. My doctor used some numbing cream that he applied with a Q-tip. It was pretty uncomfortable when the fluid was injected though. From everything Ive read about it, people's experiences can vary. If ya dont mind me asking, did your hearing get better/worse from the shots? How long did you lay down after each shot?
Qntario, 1. I'm surprised you had them only a week apart. The standard low-dose Gent protocol is once a month. 2. My hearing is worse in the days after each injection, but seems to return to baseline after a few weeks. I'd say after 4 injections that it hasn't effected my hearing much in that ear. You? 3. For the first 3 injections he only had me lay down about 10 min. I never liked that, because standard is 20 min (from what I've read). But he's the expert, so I never said anything. For some reason this last time he had me lay down for 15 to 20 min. You? I listen to a podcast as I lay there by myself, to help with the boredom. Do you feel the Gent has helped you?
Pupper, Do you have just one affected ear? Why did you decide on the VNS over a Laby, or just see if multiple Gent injections is enough to stop the vertigo?
Cricket, Just one affected ear. Since May 2015. VNS over Laby, because I'm relatively young and my bad ear can still hear at about 50-60%. Also doctor says to get VNS for above reasons. But believe me, a big part of me just wants the laby, so I can be done with aural fullness and fatigue. (I think a Laby cures that...while a VNS does not.) Why I'm not continuing gentamicin injections: Both doc and me don't think they work enough for me. He's well known and respected (I mention that because as all MM sufferers know, a good doc is super important). The daily dizziness never got much better with the Gent. And 6 weeks after my 3rd shot, the spinning attacks started coming back. So I regressed to how I was prior to the 1st shot in January. Some people are resistant to the gentamicin. I had the 4th injection just in the hope that it may stave off any more spinning attacks prior to my VNS I'm having in mid September. A "touch up" injection, as they call it. But as I said, it barely helped my almost daily dizziness. Interestingly, back in January, after we concluded the shunt didn't help enough. He wanted to go straight to the VNS and bypass the Gent injections. He said that since the ENG tests showed that I'd already lost 70% of my bad ear balance nerve function, that I was a "good candidate" for a VNS. He was pretty insistent about it. But I was scared and wanted to go by the standard progressive treatment tree. i.e. Gent...then VNS...then Laby. I wish I'd listened, because the GENT really hasn't helped much. (I could have answered your question in a short paragraph, but I think it's good to answer in some detail, as more info may help future forum readers/MM sufferers. So, sorry this was long.)
Thanks Pupper. It helps to see what other people have done in similar circumstances. My ENT isn't enthused by the Endolymphatic sac decompression (and won't do a shunt), but it seems like that would be worth trying before Gent, VNS, or Laby. I've heard some have success with it and some had not so long lasting help. There seems to be a lot of variation on how people respond to different treatments and different solutions from their specialists, which makes for a confusing situation trying to deal with this trouble. Now that I'm bilateral it adds to the complexity and anxiety of making the right choice, but I'm thankful for this forum and people who take the time to share their experiences. Good luck with the VNS and I'll look forward to your updates!
Sorry for responding so late, totally forgot I posted on here and didnt get any notification that I had a reply! I asked about the low dose protocol but my doctor said they only do the weekly routine. Cant remember the reason he gave sadly. Him and another neurotologist I saw in my city both said they do not perform the Laby anymore and havent for a long time. For whatever reason my hearing improved after each shot. The volume level didnt get any better but my word recognizition went from around 40% back up to 100%. My doctor said he has no idea why. And he also had my lay down for 10 minutes. Ive read that most people do 20-40 minutes, so I would try to stay in there as long as I could. Its really weird how doctors can have very different opinions and treatment methods for this. Really makes you worry sometimes. The doc that did the gent said my recovery would be easy. The previous neuro said it would be a hard recovery lol. It ended up being pretty easy. I felt a fairly strong off feeling for about a week and then didnt notice much. Its been about 4 months since my last shot. I think it has helped but dont want to get my hopes up. I used to have very hard spontaneous vertigo lasting maybe 10-30 seconds, no warning or anything. Most times Id end up on the ground. It had been that the way the previous 2 years. I would usually get it weekly, but sometimes more frequently and sometimes could go 3-4 weeks without it. So yeah, its been 4 months now since the last shot and havent had a hard spin. My vestibular function was at 60% before the shots. Not sure what its at now. I have had a couple very mild dizzy sensations that last a couple seconds, so im thinking the nerve isnt dead, just weakened enough to stop the hard vertigo. I have a follow up in Nov and might get a few more shots to bring it down a bit more, not sure yet. If the hard spins ever come back im going for a VNS. Im not getting my hopes up because whenever I do it seems to return. Good luck with the VNS. Looking forward to hearing how it goes. I almost went that route instead of Gent just for a higher chance to stop the vertigo as it was so bad. Hope everything works out for ya.
Thanks for the honest heads up, Pupper. I’ve got some spare narcotics that I’ll take before my long awaited gentamicin shot June 5. This doc says she uses phenol for freezing. Do you know what you had?