I have had menieres for 12+ years, and have had 2 sac surgeries with good but not permanent results. My doc says he thinks it's time for somthing more serious. I have great results with the meniette, but lately have been having more dizzies. No spinning or nausea, though, which I did used to have. I 'd love to get a job, but am afraid because of this. I am considering gent injections, and would like to hear from people who've had them. I've read about lots of good results........I'd love to hear any results. Thanks for any help. I mostly do well, but am tired of feeling I can't get a job in case I get dizzy at it. My girls are getting older and not getting out regularly is going to be harder. Thanks, Lisa
I had gent injections in my right ear. I am not getting them in my left because there is too much of permanent damage to hearing with these shots. In addition it is a short term solution (year or so). Dizzy Little Piggy
Hi Lisa, I had a single gent injection to the right ear last November, even though I am bi-lateral. The results of my eng and vemp determined the disfunctioning vestibular response of my right ear was >55%. My hearing loss was already profound from my first vertigo attack, and I was having several attacks per week at the time. After the injection, I still had vertigo attacks about once a month, but the duration, severity and frequency all decreased. My balance however was worse, and rehab helped. I also had an as yet undiagnosed problem with the right ear that was surgically corrected this July. Once the ear was repaired, my balance improved dramatically and most days I am fairly stable (physically). I have only had one full blown attack since mid-July. Wish this were a more straight forward response, but I have no way of knowing with any great certainty how effective the gent injection was by itself, however it definitely co-incided with a reduction in the vertigo. Kathleen
Kathleen, thanks for your thoughtful response. Every input helps...thanks for taking the time. Since I am "normal" most days, I know I need to be careful about taking action, as my balance is fine except during a spell. I'd hate to lose that. I think I was feeling so good for so long that these downturns are throwing me......thanks again, Lisa
I have had 3 gent injections with the most recent this past June. The first two worked for me for about a year each.. but unfortunately the 3rd one only gave me relief for 4 months as my symptoms returned a week ago. I don't know if they want to do another injection at this point, they are considering the shunt surgery but I am waiting to have all the tests done before they will decide. I had an ENG done yesterday and found out today that the results were normal.. which you would think is good.. but why am I so dizzy then??? I am scheduled for an ECOG and Rotary Chair test this thursday so I guess I'll know more then.. until then I stay on my valium so I can function to a point.. i'm off of work.. i can't drive... i can barely take care of my family.. it's so frustrating. as far as the gent injections go... I would do it to see if I can get relief again. I don't know how many a person can have before they would call it quits.. but I hope to discuss that with my ENT at my visit on Thursday. You said you have had 2 sac surgeries done.. does that mean the shunt surgery??? I hope this helps.. take care. GinaMc
Lisa, how is your hearing? My doc wants to talk Gent for the same reasons as yours, but I am young and my hearing is good, so I'm not sure...
Hi Gina What do you mean by normal ENG test results? I'm asking this because the gent is suppoused to destroy your balance and the ENG test should show the damage. My ENT did a quick and simple caloric test to me and injected 60 ml could water into my sick ear. I got no vertigo or nystagmus which means the gent has done its job. Actually there's no limit how many gent shots one can get. I had 11 but because I'm still occasionally dizzy (although I had zero response to cold water) my ENT thinks my dizzies may be MAV (not inner ear) related. Mari
Mari....... THAT IS EXACTLY MY POINT! I didn't understand when they told me my ENG was normal... I expected to get dizzy in the good ear but the bad ear showed dizziness too during the test I am assuming... I felt somwhat dizzy but not spinning when they did it in the bad ear, also.. they did it with cold and warm air and not water, will that make a difference? SO because I have had 3 gent injections in that ear i should of had somewhat of a notification that some of the vestibular was damaged....????????????????? isn't that what gent injections are suppose to do??? that is where I am confused and they told me that I will have to talk to the specialist in Milwaukee when I go there, which I am scheduled for an appt with him tomorrow morning.. but will need to leave this afternoon sometime because it is a 4 1/2 hour ride. anyway... there is where i am totally baffled because does that mean that possibly the gent didn't destroy any of the balance and is that why i am still having the attacks???? I have no clue...... any advice would be appreciated.
Gina, When I first started gent injections the ENG test showed a 55 % loss in my sick ear. And still my attacks were horrible, I couldn't stand or walk and I was very nauseous. So I think it's possible to have vertigo/dizziness as long as at least part of your balance cells are alive and functioning. Many patients are helped by only one gent injection and according to my ENT (who is very experienced with gent and has done quite a lot of research on the subject too) only few need more than three treatments. But if the round window membrane permeability is poor the gent doesn't get through it as well as it should and the patient may need several treatments. I've seen here two menierians who have had over ten shots before they got rid of attacks. So there is hope Mari
Wow......thanks for all the back and forth and information. To answer the question, my hearing in my right ear is bad, but not gone completely. I can hear on the phone somewhat with it, but when I plug my good ear I can't hear anything about me. But from what I've read, although I know losing hearing can be a big factor, I have read that in most cases you don't lose much, but have to be prepared. Is this wrong? I'm sure everyone's experience is different. Someone emailed me a video from a doctor explaining either gent or VNT....I can't remember, actually they posted it here. It was so helpful! It was about 2 minutes long and was so thorough, and made me feel so good about trying more treatment. I am going to try to find it. I function fine a lot of the time, but don't enough to not have a normal life. I think it is time for me to try something. It's a scary step. Lisa
Lisa...I had my 2nd gent inj done on tuesday and nothing has happened i am suppose wait until about 4 today and then call and have to go back in tomorrow for another one...my 1st was done in feb when i had a shunt put in too. I have had some relief up until the beg. of september...back to the way i was...but since i have bilateral i am hesitant to cut the nerve on my left side...Will let you know how things go.
Hi Lisa, just wanted to share with you my experience with Gent (a good one) I developed m.d. 13 years ago shortly after the birth of my twins, with lots of tinnitus, severe dizzy spells (one lasted about a week, most for a few hours). I had endolymphatic sac reduction surgery, which was sadly unsuccessful. When I recovered I started with the injections. I believe I had 4 before I noticed a difference. I continued to improve after I stopped. I have not had a dizzy spell in about 4 years, and the ones I had before that were much more mild. I still have tinnitus and a feeling of fullness constantly , but that I can live with. I feel like I have gotten my life back. The side effects were a slight permenent hearing loss, and I do struggle with my balance now and then, but I have gotten used to that also and can even exercise (no jumping though). Good luck to you, no matter what you decide.
Do you mean Dr. Rauch's excellent video clip? According to my ENT's experience the risk for a hearing loss increases after four gent injections. Mari
Thank you Mari and Kelli, serinoz, and everyone else. Serinoz, when you say you have lost some balance, what does that mean? Slightly wavery once in a while, or do you feel it all day? One impression I am getting is that gent seems very worthwhile before trying VNT, unless you have good hearing. Does that seem to be a consensus? Also, is there any way we can find and post Dr. Rauch's video clip here for the benefit of others, under a separate post? That was so helpful, maybe you are the one Mari who sent it to me before! Again, thanks all. Lisa
Hiya, to answer your questions, the problems that I had with balance are very minor (compared to dizzy spells). The hardest things for me to do at first were driving on flat highways, and walking for long distances (the up and down motion would bother me). I would get nauseous and woozy, which usually goes away if I am able to lie down. These problems have decreased with time; mostly I think because your eyes take over, and your body learns to compensate after a while. Anyway, I am now able to exercise. I work in an elementary school, with kindegartners running around me all the time. Driving is rarely a problem. I still will get occasionally nauseous and woozy, but nothing I can't deal with. Let me know if you have any other questions. Serinoaz(another Lisa)
Mari, yes your information has helped greatly and after my testing was done in milwaukee that is pretty much what my ENT said also. He feels that the gent just didn't work completely because of the obvious reasons... vertigo, off balance, visual disturbances,etc.. but also because I had two inner ear surgeries to repair a perilymphatic fistula leak due to the head trauma... and i had the surgeries before the 3 gent injections. he thinks that maybe there is some scar tissue from the surgery that blocked the gent from doing it's job. he did say the ENG showed some dysfunction on the left side which is the bad side but it shouldn't of showed any function period.. just like you said. so my next step is doing a VNS where they just cut the damn nerve and be done with it. I am scheduled for surgery on 10/19/06 once again 4 1/2 hour ride.... uuuggghhh but what can you do. He did test the right ear which is the good side and explained that he feels it will be capable of taking over for the nerve that will be cut... slow recovery.... very very dizzy/vertigo first few days to week and then recovery after that... not to mention opening my head and shaving some of my hair... yikes.. but at this point I am truly willing to do anything to make this go away. Thank you again... my experience with gent wasn't a bad one... just didn't work 100% for me because of my situation. GinaMc
