Gentamicin - I am VERY frightened

Discussion in 'Your Living Room' started by CINDYLOU, Apr 10, 2014.

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  1. CINDYLOU

    CINDYLOU BPV-22 years; MM since 11/2006

    I have had all of the treatments - sac surgery, various medications and some recent dex injections (again!) and the relief is just not sustainable. I am again having an episode nearly every day. The "spinners" put me down for hours and the anticipatory anxiety and the depression afterwards is awful. I no more get recovered and the next episode is on its way.

    I have researched gentamicin a few years ago but was always VERY concerned about the effectiveness and the side effects.

    I know I there have been a lot of changes in the gent strategy in the past couple of years and I am hoping some folks on this post will give me some feedback on their experiences - both good and bad.

    Thanks - I am eager to hear from all of you.

    CindyLou
     
  2. Oljanna

    Oljanna New Member

    Hi Cindy,

    i have a long history with spins vertigos and all that stuff. And I went through the gentamiacin treatment when I thought everything else was tried and ruled out and nothing helped. If you like, please check my posts. I try to keep it short in this one: First of all, please check if you had all possible illnesses ruled out, also canal dehiscences.

    In my case, I agreed on a gentamicin treatment after really learning a lot about it and still afterwards I found out that I knew just half of it. One year after the treatment, the vertigos came back and another doctor found out that I had something on top (posterior canal dehiscence) which, in fact, would have been better to be treated first.

    Concerning Gentamician, you have to know that it will kill the inner part of your balance system. So the inner part won't react on liquid differences anymore. It's mainly about the small hair cells. The water-tests will not show any activity after that. If this part is inactive after the treatment, doctors will say "it worked". That does not necessarily mean that some other parts of the balance system are dead too and will never ever transport wrong information any further. I used to believe that "dead is dead" but I experienced it myself - even a "dead" balance system after a gentamiacin treatment can produce bad vertigos.

    Most important consequence of the whole treatment is, that your whole body needs to re-learn and adapt to the new situation that the main part of the balance system does not react anymore the way it should. That can mean, that you will have vertigos and other weird sensations (like your body is not behaving the way it should with fast movements), that you get dizzy or unstable when light situations change, that you can't walk a straight line or feel drunk, that you get nausea when you have a flu becaus your body can't adapt your balance system and concentrate on being ill at the same time... it just might happen that you feel weird and even worse after that treatment for a certain time until your whole system learned to adapt. Some people at that stage then say "it did not work" - while in fact it worked but just had an unexpected effect. No spontaneous attacks but kind of a longterm-one.

    It can take long until your body knows how to cope (1,5 years) and you don't feel that tipsy anymore. The more you push yourself into life, the faster you might be able to be back on track with this.

    With me, it took 6 months until i was able to walk a straight line, one year to get behind the wheel again and 1,5 to be good and know the Do's and doesn't-work's.

    Loosing one balance system completely, due to Gentamiacin or cutting a nerve, is a huge impact on your body that works different than medicine. And, that's the main part, it's irreversible. With meds, you can stop taking them. You can try something else. If you go "gent", there won't be turning back. This is something you need to be aware of. Also, and this is something you should keep in mind, there is a risk of hearing loss. Actually, in my hospital I was the first one that was lucky and did not lose hearing due to the treatment.

    I don't want to make you scared or panic, i just want to be open with you. There are a lot of people who say it worked somehow, there are some who say it didn't (and don't know what exactly Gentamiacin does to the body) and some who really had to learn that it didn't because maybe their balance issues were not related to the balance organ itself.

    In my case, I was aware of all the cons and still decided for this treatment because at that time i thought i had checked all possible illnesses. That was the reason I did not get mad at me when I got a second diagnosis on top when my doctors found out that we missed one single thing: Canal dehiscence. I had a surgery and now it got really better. But because I lost the balance system on the right side because of the treatment, my doctors won't perform a surgery on the left side even though the same damage is visible and is definitely going to kick in some day in my life. The risk i might lose parts of the balance system on the left side and be worse than if I just accept vertigo attacks then is too huge.
    And this is the last thing you might want to know and keep in mind: If you destroy one side, you really need to be careful with the other side. It is possible to live without any balance system at all but it takes years and years to adapt to that situation, in fact the chances you might be able to adapt at middle-aged is pretty low. If you some day get bi-lateral and your other ear has problems, your dizzies, vertigos, walking will get harder.

    But those are things you should think through. That you should know and agree upon so that you don't blame yourself afterwards for making the decision.

    I am not sure if Gentamiacin is a sustainable relief. I personally doubt it, because there will still be too many parts of the whole balance-system left that might have fuck-ups. And, as I said, if your other ear gets active, it might get tricky to deal with.

    Oh and before I forget, my Treatment was in 2010. I had a so called low dose protocoll and got three injections. One each week. Three days after the third injection, my balance system died and I went to the hospital because i couldn't stop vomiting. I stayed for 4 days in there and then got released.

    If you like to know more, just send me a short PM.
    Best,
    Lilja
     
  3. dwaynehoover

    dwaynehoover keep exercising!!! if you can

    Great answer/post Oljanna!!! Its a freakin shame that ear doctors just casually offer this gentamicin to me and others with no hesitation and no mention of any of the difficulties you and others describe. This is just short of criminal. People might want to try every kind of alternative care before going with this type of irreversible treatment, not just what your doctor offers you in the 5 minutes they are with you.
     
  4. nicmger

    nicmger New Member

    Cindy Lou, I have not reached the place that you are at with daily spins. But I guess I would ask if you have checked into anti-virals - a lot of people here have had success with them. Also, while each of us can only decide what is best in our own case, I have to say that if I was in a similar position with daily spins, I would most likely push to have surgery either Laby or VNS and ensure that the vertigo could never come back in that ear. Just my opinion - and I hope I never get to that point - but I have given it significant thought and know that would be my decision with the purpose of getting my life back.

    I have read of success stories here though from people who had the gentamicin injections. It didn't appear to be anything very scary.

    One last opinion - for me any of the treatments are less scary than the vertigo attacks that come from nowhere. If you make it through those, you can get through anything!
     
  5. Donamo

    Donamo Guest

    I was going to add my thoughts but they are exactly the same as nicmger ^^
     
  6. MDH

    MDH New Member

    Cindylou:

    I went throught the low dose protocol as well - 4 treatments. After number 4, testing showed it had only dialed my vestibular function back about 20%. I was dissappointed, but can say with complete confidence that it did help. There's no doubt in my mind that reducing vestibular function by 20% decreased the intensity of my vertigo episodes, and did ease some of the daily dizziness. It's hard to know what your result would be. One treatment might do the trick, or you might get 4 like I did and only get partial relief. Had I had a job that would have accomodated the occaisional spin, I might have stopped after 4. But I felt I needed to completely eliminate the possibility for even occaisional vertigo and eventually went with the laby. By then my hearing was already crap.

    There's no reason to be frightened, but then I would agree with what others have said - think it through carefully and try a few other things if your situation allows.

    Michel
     
  7. bulldogs

    bulldogs New Member

    I wish I had never heard the word GENTAMICIN.

    I am sympathetic to the laby, but leave the cochlea/snail in there in case you need a CI one day.
     
  8. Oljanna

    Oljanna New Member

    It's good if the doctors can actually just reduce verstibularis functions like Micheal had. And even cooler if it works. Just saying you should know that it also could be that you loose all - and then have the same effect as i had. Same goes with a nerve section - whenever one vestibularis system is knocked out, your body will have to learn to cope.
    For me personally, a VNS was and still is the least ones of remedies. Because this will really cause hearing loss and is a huge step - in contrast to gentamiacin that MIGHT reduce hearing.
    I also had one vertigo a day and it was really annoying to me. So I was open for any idea that could give me my life back. Just saying it's all about knowing the whole list of pros and cons.

    And as I mentioned, just make sure you have all the things checked that there are before deciding for something destructive.
     
  9. redwing1951

    redwing1951 New Member

    I had one gentamicin shot. It was successful for about 8 months. My vertigo attacks turned into small mini spins, pretty much on a daily basis. I felt like total crap each and every day. My OTO offered another gent shot or a laby. My hearing was gone so I chose the laby. The first month after the gent shot was hell, but I am thankful I had it because I do believe it killed off most of my vestibular system and made my recuperation from the laby much easier. This was my experience. Only you can decide if the gent shot is the way to go. My only advice would be not to keep having gent shots. Some folks have tolerated as many as 9 shots and still did not get the relief they were looking for. It is not an easy decision, hopefully your OTO will help you understand the pros and cons. I am so happy I had the laby, it gave me back my life. Best of luck to you on whatever you choose to do.
     
  10. Dizzy Little Piggy

    Dizzy Little Piggy OINK OINK

    I had many gent treatments and it helped although it is a temporary help. Depending on the strength of the solution used you can gain anywhere from 3 months to close to a year of relief. The downside of using gent is that it can and will cause permanent hearing loss. In my case I chose to use Gent 4 times in less that 15 months because I seriously wanted to lose more hearing in that ear. At the time I had a C.I. in the other ear and the ear with the hearing aid was getting really bad. I got a C.I. in that ear about a year ago and love having two hearing ears.
     
  11. Joanne5170

    Joanne5170 New Member

    Hi

    I was in your boat in 2000 tired everything and had disabling vertigo had no life.

    I opted for the VNS and did not do the Gent I wanted a permanent solution.

    In 2002 I had the VNS no regrets. I have had no spinning or dizziness

    some hearing loss in the left slight tinnitus. I feel like I am cured.

    It took me 6 weeks to recover no regrets.

    Today I have perfect balance went ice skating yesterday in NYC Rockfeller Center
    Life is Good.
    If it ever goes into the other ear Dr. Brackman said it can be fixed. Go for it stop

    suffering. If you have tired everything than do it I live in NY went to the House

    in LA.


    I would be more scared today taking vaccines and meds.
    Joan
     
  12. rogerh

    rogerh New Member

    Hi I had one gent. shot [ vary strong] in 2003, it put me in bed for almost 3 days, have not had any vertigo or vomiting, not even a drop. still have fullness and off bal. now and then. for me it has worked well at least for the past 11 yrs. sometimes the T. is very loud. now have 1 hearing aid.
     
  13. Stacbird

    Stacbird New Member

    Hi,
    I just had the gent. shot Feb. 18th. Was really bad for 3 weeks and now much better. No more spinning or puking since. I have not been able to go back to work yet, still adjusting to the balance, but I do have pressure around temple area and nose and a terrible stiff neck. The neck part I am guessing is from stressing from all the vertigo stuff but does anyone else have stiff neck with theres? I have told my dr. but he seems to have no clue why the pressure on the temple area or why I have a continuous stiff neck. Thanks for everyone comments about their situations, the information is certainly helpful.
     
  14. CINDYLOU

    CINDYLOU BPV-22 years; MM since 11/2006

    Thank you so much to each of you who answered my question. I am still not sure what will be the best choice for me as it is clear that none of our cases are exactly alike. I had a dex injection on March 19 and after three weeks I was still having daily episodes. However, the last two weeks were episode free until today when I had two (minor) episodes. I was about to withstand them with no meds - just rest. I don't know if i should get another dex and am still very confused - anxiety, crying and just miserable.

    In the past after many of the various treatment I would get 6-8 months of relief but in the past 2.5 years I just haven't had a life. Last year at this time I had had over 200 episodes in the previous 18 months, was suffering from anxiety and panic attacks and was fearful to be left alone so I went to Mayo's in Rochester.

    I am having good results with the behavioral therapy as they have helped with the anxiety and depression. I am scheduled to return to Mayo's at the end of April for a likely additional Dex injection and to discuss other treatment options. Like Gent and laby. My otolaryngologist has been very cautious about either approach due to his concern that I would end up with a walker. So that was the motivation for the question about the gentamicin.
     
  15. nicmger

    nicmger New Member

    Cindylou - not sure if you have talked to your doctor about it or not, but some people here have had some relief when taking amitryptiline (spelling?). Believe it is low doses but helps to calm the nervous system - is also an anti-depressant. Perhaps it is another option to consider. I am not one to like taking a bunch of meds but if you are depressed, having panic attacks it might be a possibility.

    Good luck
     
  16. debin

    debin New Member

    What about the option of Dex injection? I've just seen better results verses the gent.
     

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