Author Topic: Advice on having Intratympanic Gentamicin  (Read 11964 times)

Offline gm

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Advice on having Intratympanic Gentamicin
« on: Oct 27 2009, 01:39 PM »
Hi,

I have had MD for three years now, with all the usual symptoms. Sometimes I can go a month or more without any vertigo/severe attacks but other times it can almost be weekly.

Have been on Serc now for 3 years and have had various tests, etc.

Last year I had an endolymphatic sac decompression. This was fine for about 4 months then slowly all the symptoms started again.

Next week I am having Intratympanic Gentamicin. It is being administered as a foam like solution behind my eardrum. I am interested to hear how other people go on with this procedure, i.e. did it work overall and more importantly how long was it until you were able to return to work, how long did it take to adjust to having the balance destroyed in that ear, etc?

Many thanks for all replies . . . .

Offline Christina

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Re: Advice on having Intratympanic Gentamicin
« Reply #1 on: Oct 27 2009, 02:38 PM »
Hi GM

I haven't had gent treatment so unfortunately I can't share experiences with you but there are others on the forum who will be along to give you some advice. 

If you Search the forum on gentamicin, I am sure you will find lots of older posts that may help.

Chris x
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Offline Michael C

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Re: Advice on having Intratympanic Gentamicin
« Reply #2 on: Oct 27 2009, 03:11 PM »
Hi GM

I had two gent injections with a period of about 9 months between the two.  On having the first injection, I began to notice it taking affect after about three days.  It was mentioned that I should expect an attack after about ten days, but nothing happened.  My balance was a bit out of kilter for about three weeks after the injection, but after forcing myself to walk a lot, things began to be normal and I started to even feel better.  After about six months, the nausea and vertigo returned, and I was given a second injection, which had a much stronger effect.  It took me 4 weeks to get back to normal, again forcing myself to walk a bit further everyday, which was at times exhausting.  I now have no balance in that ear, and although I can sometimes notice unsteadiness, you can still carry on with day to day life.

There have been many posts on this subject on this fantastic site, and I'm sure that you will get good advice from the other members.

I really hope things work well for you and that you will feel the benefit quickly.

Take care

Michael

Offline gm

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Re: Advice on having Intratympanic Gentamicin
« Reply #3 on: Oct 27 2009, 03:36 PM »
Chris, Michael, many thanks for your replies . . .

I am looking forward (if thats the correct phrase) to having it done, so it stops the attacks I keep having which quite frankly make life at times quite miserable

However, I am still a little cautious as to how I will be after, regarding balance etc and am concerned about having an attack for a week or so

regards

Gordon

Offline Christina

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Re: Advice on having Intratympanic Gentamicin
« Reply #4 on: Oct 27 2009, 05:09 PM »
 Hi Gordon

The gent injection is a temporary measure for most people, which does need repeating after a few months.  It's likely you will have a reaction to the injection - which means that you will probably get some vertigo and imbalance for a while.  The gent destroys balance in the inner ear but the doses they give don't completely destroy it all at once.  While the brain compensates for the damage that is a result of the injection, you are likely to feel unsteady and as we're all different it's impossible to say how long you'll feel this way for - could be anything from a few days to weeks.

Hope this helps.
Chris x
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Offline gm

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Re: Advice on having Intratympanic Gentamicin
« Reply #5 on: Oct 27 2009, 05:25 PM »
Chris,

Many thanks for your reply . . . fingers crossed it will be just a few days. I was told it has an 85% success rate with a 20% chance I could lose up to 20% of my hearing in that ear . . . so it has to be worth having done. I have also been told that the procedure could be repeated up to three times. However, I am having a foam with the chemical on put behind my eardrum so it is being administered differently than having the injections so I would imagine it could be a higher dose

regards

Gordon

NEWOSA65

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Re: Advice on having Intratympanic Gentamicin
« Reply #6 on: Oct 27 2009, 09:15 PM »
Hi Gorden,

Welcome to the forum - you will receive lots of good advice here and everyone is friendly and very helpful.

I had the sac op and i too was very disappointed with the outcome - i managed 9 months without any attacks but then the attacks returned with vengence and were worse than before i had the surgery.  It was disappointing because i was promised an 80% success rate for this surgery and as you know there is risks involved which i decided to gamble as i thought that 80% success was worth the risk.  In my view i reckon the success rate is 80% for only the first year!  In my opinion i do not think this surgery is worthwhile.

Now the gentamicin - its amazing how the ENTs favour different methods of adminstering the gentamicin.  I was not offered the gent spongue operation although i am aware that a few other sufferers of Menieres on the forum has had this operation.  I was offered the more straightforward gentamicin injection directly into the middle via a grommet (or without grommet although may not be as effective this way) which then involves laying on your side afterwards for 40 minutes for the gentamicin to enter the inner ear via the round window.  This method of adminstering the gent does not involve a general anaesthetic, it just involves a local anaesthetic which i much prefer as i am not too keen on being put to sleep.

If the gent reaches your inner ear then you may, depending on how much vestibular function you have in the affected ear, feel disorientated (or dizzy) for up to 3 weeks.  I suffered for approx 3 weeks afterwhich my vertigo attacks were then under control.  You may not need any further treatment with the method that you're having but there has been a few other sufferers on the forum who have needed up to 3 gent ops to finally control their attacks -I guess it depends really as we are all different and therefore react differently to different procedures.

Good luck Gorden and i hope you get the result that you want :)

Simon









Offline gm

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Re: Advice on having Intratympanic Gentamicin
« Reply #7 on: Oct 28 2009, 05:50 PM »
Simon

Many thanks for your reply.

You say you were disorientated for 3 weeks. Was this constantly or did vary from day to day?

The only part of having it done that bothers me is how long I will be disorientated, etc. after.

Also, were you given any medication to help with this and did you have excercises to do to help improve your vestibular functions?

regards

Gordon

NEWOSA65

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Re: Advice on having Intratympanic Gentamicin
« Reply #8 on: Oct 28 2009, 06:02 PM »
Hi Gorden,

I was disorientated every day for approx 3 weeks.  We are all different though.  Some people may only suffer for 3 - 5 days, for example.  My reaction was not a feeling of vertigo or dizziness - i felt extremely giddy and off balance but had i have taken a course of anti-dizzy tablets like 2 buccal tablets daily for the period of time that i had suffered, i may not have suffered quite as badly as i did!  Reason i didn't take any medication for the disorientation is because i wanted to monitor how things were on a daily basis and to keep an eye on any improvements, something which i wouldn't have been able to do had i have taken the anti-dizzies.  I also think that the reaction to the gent depends on how much balance function you have remaining in your affected ear and how much of the gentamicin actually enters the inner ear.

Anyway, good luck with it all Gorden - i for one have never looked back.. okay, i'm still battling this awful disease but quite happy to have top-ups when i need them.

Best wishes,

Simon :)

Offline gm

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Re: Advice on having Intratympanic Gentamicin
« Reply #9 on: Nov 02 2009, 08:24 AM »
Many thanks for that Simon

well, tomorrow is the day I have it done. I will post on here in a week or two once I have had it done and let people know how it went

fingers crossed it all goes fine and hopefully works  ::)

Offline Christina

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Re: Advice on having Intratympanic Gentamicin
« Reply #10 on: Nov 02 2009, 09:59 AM »
Best of luck GM, will be thinking of you!

Chris x
not waiting for the storm to pass, but learning to dance in the rain ...

Offline gm

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Re: Advice on having Intratympanic Gentamicin
« Reply #11 on: Nov 02 2009, 10:57 AM »
many thanks Chris, will post on here how it goes over the next few weeks  ::)

Offline gm

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Re: Advice on having Intratympanic Gentamicin
« Reply #12 on: Nov 05 2009, 01:15 PM »
well the op went well, just have ear ache at the moment but have been told to expect a major spin within 2 to 3 days, so anytime from now on it should happen.

have to go back in 2 weeks to have dressing removed from inside my ear.

will keep everyone in touch with how it all goes


Offline gm

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Re: Advice on having Intratympanic Gentamicin
« Reply #13 on: Nov 01 2010, 01:14 PM »
Hi, just looked the forum as havent looked for such a long time and saw thought I would update how I have been . . . .

Well its almost a year since the gent procedure and (touch wood) I have been fine, apart from the 6 weeks after having it done.

My consultant said that if I was to go a year I could also come off the Serc which I will probably do early next year.

My hearing is not as good but I dont mind that too much as the spins and everything associated with them have stopped.

Hopefully that will be it but I have been warned it could return

Offline gm

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Re: Advice on having Intratympanic Gentamicin
« Reply #14 on: Mar 18 2013, 01:00 PM »
Update . . .

Well I have had no spins, etc for over 3 years but the last couple of weeks it has all started again  :-[

Hopefully its just a blip but was told when I had the procedure that a top up may be required at a later date.

I will give it a month or so then get in touch with GP about it . . . .

Offline F8andbethere

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Re: Advice on having Intratympanic Gentamicin
« Reply #15 on: May 07 2013, 08:06 PM »
Hey Gordon, I've just had the gent last week and am waiting on the spins to hit, it's 7 days in... Hope your top up works - I was always warned that you often need two to really destroy the hairs... Hope you get a top up sorted! Lou
Lou
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Offline SJ

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Re: Advice on having Intratympanic Gentamicin
« Reply #16 on: May 07 2013, 08:57 PM »
Hi Gordon

Sorry to hear you may have symptoms again if you do I hope a gent top up will get you back on track.

I just wanted to ask with your symptoms did you ever suffer drop attacks? I am currently suffering from these and seeing my consultant tomorrow. I know he offers the gent in the same way you had it done so ay be an option for me?

Thanks
SJx