Success with Gentramicin

Steve - That is absolutely fabulous. great news. Where did you go for your Gent injection. My ENT would rather do the surgery than the Gent Injection. With everything i have read and researched the efficacy of the Gent injection actually seems better than the surgery. i have 2 friends who did the Gent injection with results similar to you. A couple of important questions: (1) how long were you woozy after the gent injection while the balance nerve in your good ear had to take over your whole body. i hear it is from 2 weeks to 2 months. That is the scary part for me putting my life on hold after the injection. (2) How much was your balance nerve destroyed before the ENT did the gent injection? I am taking a VNG test this week to find out my situation. It is my understanding the more the balance nerve is destroyed prior to the injection - the easier it is after the injection for your balance nerve to take over and the unsteadiness is less intense and doesn't last as long. (3) Did valium help after the injection with the unsteadiness before you started feeling normal again? Thank you for your help on this? And congratulations on your success - keep it up.

 

I have the same concerns after the initial gent shot, that it will bring on a major attack. I had Endolymphatic Sac Decompression surgery in April but my symptoms are coming back.

 

Steve - Thanks for sharing your story! I was hoping that others who have tried the gentamicin injection would read this as I have question. I had a single high-dose gentamicin injection October 1 and it wasn't until October 26 that I became very dizzy (drunk dizzy, not spinning). Considering that I haven't felt like that in the 5 years since the unexplained incident that left me deaf on the left side with tinnitus, etc. I am attributing this reaction to the injection, even though 4 weeks seems like a long time for there to be a reaction. I was wondering if others had a similar experience, where there was a profound delay in reaction? I was originally disturbed by this dizziness but after reviewing one of many medical journal articles I have, I remembered that dizziness/reaction to the injection was a very GOOD thing, because it indicates that destruction of the vestibular mechanism occurred, creating a left/right imbalance, which the brain then need to work on compensating. For now I'm trying to enjoy working 'drunk' and hoping to see some positive results in the next few days/weeks. Scheduled for injection #2 in 2 weeks. Thanks again for sharing your success story!

 

Good morning. I am new to this forum and I am so happy to have found it. Meniere's can be a lonely road at times, as we all know. I had my first Gentamicin injection Nov. 21, 16 days ago. My experience was feeling normal (a little constant dizziness, brain fog, ear fullness, and screaming tinnitus) for the first week. On day 9 I had a full blown rotational vertigo attack that was one of the most crippling of the 13 years I've lived with this thing. Since then, a constant dizziness and, maybe, slightly better fullness and tinnitus. I've had a couple episodes of more significant dizziness which have lasted 45-60 minutes, but these were different than a full on bout of vertigo. I was able to carry on and do what I needed to do (I teach...). I go back to Boston on December 19 for a check up and, maybe (?), a second shot.

The brain fog has plagued me for years. It has definitely been worse since the shot. I trust this is because of the incessant dizziness. Does this sound like a normal reaction to the medicine? Has anyone experienced something remotely similar?

I really appreciate any feedback. I just want this to work and so I am anxious to know more about my symptoms.

Thank you so much everyone.

Mark

 

Understanding that everyone is different, I guess I am also interested in how long it has taken people to get their balance back. A couple weeks? A couple months? etc...

 

Mark - so sorry for your struggles. I am contemplating a Gent injection but my ENT does not want to because of a perfectly good balance nerve in my diseased ear. He prefers the outpatient surgery. Steve - do you recall how abnormal your balance nerve was when you had the Gent injection. Why did your doctor try to talk you out of it right up until you did it? How long was it before you started feeling good again after the Gent injection. With a perfectly good balance nerve, my ENT says the after effects of the Gent injection will be tough and a long road to rehab to get my one good balance nerve to take over could be worse than the vertigo. I'm very confused and nervous given my not so great options. Been on Prednisone for a week to get me through this tough cycle but will taper off soon. No episodes while on the Prednisone. Not confident after it wears off. Just not sure what is the best course of action.

 

Hey there. Thanks for the reply. Much appreciated. My Dr is down at Mass Eye and Ear and he’s done a bunch of the primary research on Gentamicin. At the end of the day, I just trusted him and really needed to try something new. Everything up through steroid injections had done nothing. I think my balance nerve was fairly compromised already as I’ve had this low level, daily dizziness for several years. I look forward to some additional replies. I think (?) things are working based on my unbalanced feelings, but it’s nice to hear it from other people. Thank you so much for the reply and be well.

Mark

 

I do have one more question if anyone happens to know an answer. I was diagnosed in 2005 and probably had this ‘issue’ since 2002 or so. It’s just my left ear. Are there any statistics out there which informs when one might develop bilateral Menieres IF it’s going to happen. I’d like to convince myself that I’m out of the woods but I really have no idea. Thank you all!

 

Hello.
I had 5 shots a year and a half ago. My nerve had 60% function left at the time. I had read that recovery can be hard, but my doctor had said it shouldn't be bad. After my 4th shot, I started to feel a little off. My doctor would do an eye test, having me follow his finger as he moved it around. I guess he could see my bad side eye not following as quickly.

Anyway I did a 5th shot since I was already there and went home. The recovery was pretty easy. I didnt have terrible vertigo. My balance was a bit off but was fine walking around.

I'm not sure what % function my ear is now, but I haven't had any real vertigo since. My hearing got better in my bad ear as well. Have you tried vestibular rehab exercises? They helped me a lot with the brain fog and dizziness.

 

Mark - Did the dizziness subside following your injection? My understanding is that the dizziness is *exactly* what you want because it is an indication that the gentamicin did its job and fully/partially destroyed the vestibular function. The idea is that you purposely unbalanced the balance system but in time the good side would compensate and take over. I was wondering if that happened for you?

I didn't have any luck with the injections (no affect after 3 of them), I was hoping for the dizziness that you described. I'm now planning a labyrinthectomy on that side as a last resort.

I hope you're symptoms have improved,
Mike

 

Mike, how is your hearing in bad ear? If it's still socially useful, have you considered a VNS? Like you, gent didn't help me either.

 

After the gent shot I did get relief from vertigo for about 8 months but I felt like crap every day. When I started in with vertigo I decided to end my misery with a laby. So thankful I did.

Pupper I am curious you have had two VNS? You still feel like crap? What exactly do you think is going on? And why do you you recommend the VNS over laby? Is it because you still have hearing left in your mm ear?

 

Pupper - My apologies, I think I missed this question a while back. I permanently lost 100% of the hearing on my left side, so that was not a concern with the gentamicin nor would it be for a laby. After 3 gent injections I have gone from 35% vestibular function to about 5%, so my doctor is questioning whether that warrants a laby to get rid of the remaining bit. Even though the vestibular function has been nearly fully destroyed, it hasn't had any affect, so I'm trying to investigate whether there should be any expectation of the remaining 5% having any significant affect, that would warrant undergoing the surgery.

 

Any more updates post-gentamicin here, guys?

I go for my first one June 5. (Sorry for doubling up but it looks like there are a few different folks on different threads.) My VNG shows my bad vestibular nerve is functioning at less than 50%.

 

I’m spinning and stumbling through my post-gentamicin time (injection 2 1/2 weeks ago). Any updates from these fine folks?

 

Can you tell me how you were immediately after surgery while in the hospital?

 

Saera when I woke up after the surgery I felt light headed and off balance. I was a little nervous to get up and get out of bed. A nurse did help me and I was able to walk to the bathroom with her assistance. I spent one night in the hospital. My OTO came in early the next morning and asked me if I felt I could get out of bed by myself and walk to the bathroom. I did have to balance myself by "wall/furniture" walking but I was able to get to the bathroom as my doc observed. He discharged me. I walked to the car on my own. My husband drove me home. My head still felt very light but I never experienced any form of vertigo. When I got home I went to bed exhausted! I was "bouncy" in my gait for about 2 weeks. I had double vision for about 4 days but only in the morning. After 2 weeks I felt good enough to start driving. For me the surgery went well and I would not hesitate to do it all over again if I needed to.

 

That’s so awesome to know. I get closer and closer to making that choice if it’s offered to me!! Thank you