Posted , 6 users are following.
Following three steroid injections in right ear over the past six months my consultant now wants to destroy balance organ with Gentamicin injection. What do you think, have you been through this?
0 likes, 15 replies
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angela84522 ray02954
Posted
What else have you tried? That's a big decision. It's a last resort for me. But if I were really bad and nothing else helped I would think about it. Are you already deaf in that ear?
ray02954 angela84522
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angela84522 ray02954
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eleftherio33095 ray02954
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Always in similar cases where therapy has failed, and before the next irreversible treatment, you need to consider first if the diagnosis of Meniere's disease is correct beyond reasonable doubt.
Eleftherios S. Papathanasiou, PhD FEAN
Clinical Neurophysiologist
Fellow of the European Academy of Neurology
JMJ eleftherio33095
Posted
Dr. Papathanasiou,
I'm curious about something I've seen frequently here on the forum. Patients often consider themselves a failure after one, two, or three steroid injections. Some receive just a single injection, and others receive a few injections one week apart. I wonder if they, or their doctors, are giving up too soon?
I had extremely severe MD for a yea ( no improvements with conservative measures), before I was finally referred to a otolaryngologist who started me immediately on steroids injections: 10mg Dexamethasone every 4 weeks. He feels very strongly that this is the protocol that produces the most postive results, as it gives time for the drug to work, for protein synthesis to begin to happen on the cellular level, as well as giving plenty of time for the ear drum to heal in between injections . He never expects dramatic, instant effects with MD, but rather a gradual reduction in the number and intensity of episodes over time. (He prescribes a good set of rescue meds to use while waiting for the steroid to do its work.)
If my expectations hadn't been set correctly, I think I might have given up and considered myself a "failure" after 3 injections. But, 3 months/3 injections, was actually the turning point for me: During the fourth month, I began to see a significant reduction in the number and intensity of episodes. After 5 months (5 injections) it was remarkable: I experienced a huge "shift"...My head cleared, the "episodes" turned into occasional mild dizziness with nausea, my balance was entirely restored, the the fatigue diminished. After 6 months, I was symptom free, except for an episode of fullness in the ear, and increased tinnitus, and so I had another injection. During the 7th month, I was completely clear. And lately, my tinnitus has actually reduced by more than 50%, which has resulted in my being able to hear quite a bit more clearly. I am amazed, as I never expected any improvement in my tinnitus or hearing -- it was enough for me, just to get rid of the vertigo.
For me, the amount of hearing loss I had in my bad ear was devastating. But, I wanted the option of being able to use a hearing aid. To opt for a more destructive approach, takes that option away. And then, what if I got it in the other ear as well? Then, hearing becomes such a huge issue.
I think that in the middle of my first year "on the couch," so terribly sick with MD, had I been offered a more destructive method, I probably would have taken it, as I was truly desperate. It was only sheer luck, that I was referred to the head of a local university's ENT department, who believed strongly in steroids. He has put Gentamycin out there for me as an option, should the steroids stop working at some point. But in the meantime, he's willing to give me as many steroid injections (at minimum 4 month intervals) as I need, in order to stay well. When I feel stable, we'll increase the intervals to every 6 weeks, 7 weeks, 8 weeks, and so on.
I'm just wondering if you have any thoughts or advice for patients (and perhaps doctors) re: which steroid protocol to follow, and how long to stick with a steroid protocol before considering it a failure?
Thanks very much,
J-
eleftherio33095 JMJ
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JMJ eleftherio33095
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Thanks again!
J-
eleftherio33095 JMJ
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http://www.cochrane.org/CD008514/ENT_intratympanic-steroids-for-menieres-disease-or-syndrome
JMJ eleftherio33095
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Thanks very much! I haven't been able to find anything myself, that resembles an "standard protocol". I look forward to reading this.
J-
barry61472 ray02954
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Had two Gentamycin injections. It is an antibiotic and doesn't destroy balance. In fact may help it for a time. With me, the vertigo and dizziness came back each time. Finally had to have a Labyrinthectomy, which does destroy balance mechanism. I had that done 3 months ago. Now I am in PT learning how to walk again. Godspeed in your decision.
JMJ ray02954
Posted
How long did you wait between each steroid injection, and what dosage did you receive?
J-
ray02954 JMJ
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JMJ ray02954
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Hi Ray,
I'm happy to hear that you'll carry on with the steroids for a while...I hope very much that it will be the treatment that works for you. It really is a gradual process requiring great patience, but for me, it has paid off in a big way. And the wonderful this is, that it can do no harm. There is no price to pay in terms of balance or hearing, or anything else. I have no regrets (well....other than I wish I had started them sooner!). I hope you will eventually feel the same way!
Wishing you all the best!
J-
tanney ray02954
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Hi Ray. I had the Gentamicin injection 30+ years ago in my left ear. It completely eliminated the vertigo. It also reduced my hearing from 75% to about 35% in left ear. It did not affect my balance at all....apparently the right ear (good ear) makes adjustments for the left ear's lose of balance. Overall, I have had no balance issues at all. The Gentamicin will destroy most of the balance nerve in the affected ear...that's how it eliminates the vertigo. In my case it was enough to stop the vertigo completely. If you definitely have Meniere's Disease and the vertigo is debilitating...and you have been seen by an ENT who specializes in inner ear problems (important!) than I recommend the proceedure. It's quite benign and is similar to the steriod injections you had....just make sure you do not swallow for the 20 minutes following the injection. The Gentamicin did not help with tinnitus unfortunately. I still have that in left ear. I've recently developed MD in my right ear and now have what is called bilateral MD. It's a bitch to have it in both ears. I'm hesitant to have the Gentamicin in the right ear since my left ear balance is almost gone from having the procedure 30+ years ago. I have some tough decisions to make about the right ear now. In your case, though, with still one good ear, the Gentamicin seems like a reasonable choice for you.
One more thought. MD is often caused by and made worse by allergies. Have you had allergy tests to eliminate that as the source of your current symptoms?
ray02954 tanney
Posted