Gentamicin injections

Thankyou for all your replies. This treatment was very much a last resort with all other treatments failing. I'm just very nervous of my top up injection after the experience I've just had. I was hoping someone had experienced this treatment to let me know how they were after the top up.

Jack, it's best to believe what your ENT says.  He believes your post procedure vertigo episodes will be less intense following second injection.  Most MD patients' experience is exactly that.  Keep in mind that you will very likely be vertigo free forever shortly after the second injection...as I was and are almost all MD sufferers who have the procedure.  Go for it.....you will be so glad you did.  GOOD LUCK....YOU CAN DO THIS!

I had one and was bad after. I have however since found help from a physiotherapist who adjusted my neck.

Hi Jacks1968,

I have just had my “top off” gentamicin injection.  Like you, I was very ill after my first one, and was very nervous to try it again.   I am now 72 hours post injection and have not had the severe side effects like I did with the first one.   I have noticed a little balance issue here and there, and I am pretty nauseated, but that’s all so far.  I hope this helps.   I would definitely get your second injection.  Anything is better than the constant vertigo episodes that I was having. 

Thankyou for all the comments. Monica I'm glad your feeling ok after your top up. I'm getting mine on Wednesday so fingers crossed I'm ok after it. I'm still unsteady after the 1st one so definitely need the top up as I don't want to be left like this.

Jacqueline

Hello all - I read jacks1968's (my birth year also) post and all of the replies and really appreciate everyone's shared stories.  I don't have 'full blown' Menieres, however I did have an episode 5 years ago that resulted in left-side deafness, loud tinnitus, aural fullness, and extreme brain fog, especially after looking at computer monitors (mac retina displays are the only ones that don't make me queasy and head-achy within minutes).I have seen ENT specialists from Boston to Maryland and have heard very conflicting diagnoses from "Vestibular Migraine" to "Definite candidate for labyrinthectomy ".  I have recently decided to try the gentamicin injection and my research has uncovered a few options I wanted to ask the group about:

    1. Low dose vs. High dose - My understanding is that you only opt for low dose when you are trying to spare hearing.  I have zero hearing on that side so I am planning to opt for the highest dose (concentration) that is available, with the hope of fully destroying the vestibular function with a single injection and not having to go back.

    2. Duration - I read that the typical administration is to introduce the gentamicin and let it sit for 30 minutes, but in other cases they wait as long as 60 minutes.

My thinking is that the combination of high dose and 60 minutes of contact would be the best way to maximize the results of the treatment while creating no risk.

Very interested to hear if anyone dealt with similar considerations or is aware of risks to this approach that I may not have uncovered yet.

Thanks and good luck to everyone in managing your health.

Mike

I had the gentamicin treatment about 5 injections over a three year period. At first I was rather ill but gradually recovered and now am much better. I have, however, noticed that I get severe 24  hour attacks from certain antibiotics. The attacks consist of vertigo, tremendous headaches, nausea and pain throughout the body.

   I think I can control the medication to avoid these attacks in the future.

   In sum, the contaminate treatment worked.

Very helpful to see this board. I am a severe MD sufferer for the last 2 years. I had shunt surgery a year ago and it seemed to help - fewer and less severe attacks. But I had a drop attack a week ago which was terrifying. I had to go to the next step and received my first low does gent injection yesterday. I haven't yet started to feel the impact of vertigo or imbalance, but see from people on this board that it sometimes take a few days to kick in so I'm just lying low and waiting to see what happens. And I am hopeful that things will be better once I get through this stage. 

I had low dose gent injection in Oct. My Meniere's had been getting worse and none of the non-intrusive drug (everything everyone tries and more) and diet therapies (low salt, caffeine, etc.) I tried made any difference.

It took a couple of days to kick in and since I have had neither dizziness nor vertigo episodes. My ear seems less full as well. My hearing has not been affected for better or worse.

The trade off is that over three months after the injection I feel off balance all the time. Not bad enough to fall over, but just off kilter all the time. The feeling is with me all day, every day. After I had the injection, I read a study documenting that two years after the injection, 22% of patients were still feeling off balance. I take that to mean some people will feel off balance for the rest of their life, a group I increasingly worry I belong to.

FYI, my doc wanted to do an endolymphatic sac decompression surgery instead, but I read studies that document that is ineffective 25% of the time. Its fairly high failure rate, combined with the risk inherent to surgery on the head, were the reasons I opted for the shot.

I add this comment to bring folks another perspective on the low dose gent option. Good luck.

If i can be of any help, ive had four injections now, 3 Gentamicine and one Steroid. After the first two Gentamicine injections of maybe 7 or 8 months apart, i started to see signs of longer periods of stability between episodes of the Meniers symptoms for the first time in several years and, those episodes were less imposing time wise, although still inhibiting. However, they still sporadically returned. After the third Gentamicine injection i went nearly a year with nothing more than the symptoms of an episode approaching, then a very short attack lasting a minute or so and then it was gone again. With that on my next consultation a steroid injection was advised, which i had and now a year later all i get is the occasional light headedness lasting a few minutes and then back to normal. Its changed my life having the injections and my consultant did suggest i could be rid of the meniers after around 7 years from when the first treatment began, which is about now. I might close by adding, 5 previous consultants offered no treatment or plans for treatment other than histamine tablets and antihistamine tablets. One consultant even discharged me as NOT having meniers due to the sporadic nature in which i was having the spells with the clear stable periods in between. So i was ultimately fortunate to find my current consultant.