Tinnitus from Meniere's Disease — I'm Told I Need to Have the Inner Ear Removed

[MSHBD]

Hi there, I'm a 42-year-old female. I also suffer from tinnitus due to Meniere's disease. I also suffer from severe vertigo. I've had this since 2009 and it's only gotten worse. I also wear an ear plug in the affected ear as sounds are excruciating. Reducing or cutting out all sodium, caffeine, alcohol will lower the tinnitus symptoms but will not make it go away.

I previously had surgery in my inner ear and had a silicone implanted however I believe it's no longer working.

I am now being told I need to have the inner ear removed in order to stop my vertical attacks since they are so severe.

I'm no longer able to do many of the easy things in life for long periods of time for example work, drive, use computers, read etc. It makes me extremely dizzy in my eyes go side to side and I become very sick.

I've been researching this 2nd surgery but no luck.

Have you heard of this?

Thank you,
MSHBD

 

[oceanofsound26]

Hi @MSHBD - Sorry to about everything going on your tinnitus and Meniere's Disease. It is very sad indeed. @glynis I believe has Meniere's Disease. She has a lot of experience dealing it and tinnitus. The forum is replete with excellent advice and information she has provided others in the past about this and similar topics.

 

[MSHBD]

Hi oceanofsound26,

Thank you for taking the time and reading my post. Sad indeed and scary. I am hoping my post will reach others to help them understand what it is like if they're just experiencing this or have already.

I have researched Labyrinthectomy as this is what I will be having in a few months.

I am unsure what caused all this year's ago as I do not recall any head injuries or trauma.

If you may come across any further information on this please let me know. Thank you for your time.

MSHBD

 

[GregCA]

Hi oceanofsound26,

Thank you for taking the time and reading my post. Sad indeed and scary. I am hoping my post will reach others to help them understand what it is like if they're just experiencing this or have already.

I have researched Labyrinthectomy as this is what I will be having in a few months.

I am unsure what caused all this year's ago as I do not recall any head injuries or trauma.

If you may come across any further information on this please let me know. Thank you for your time.

MSHBD

Hi,

I'm sorry about your situation. I am sympathetic.
I would ask for a 3rd, 4th and 5th opinion from specialists before going through with the labyrinthectomy, as it's a one way door.
Good luck, and please keep us posted.

 

[oceanofsound26]

Hi @MSHBD - I can sympathize with the way you are feeling right now with facing this surgery. I was in a bad car accident while in college which left me with a severe skull fracture, my second concussion, and in a coma for three days. It was a long road to recovery.

Fast forward to this summer, comparisons of my MRI taken 3 months post surgery and recovery for that TBI and my MRI taken to check for neurological causes of my tinnitus this summer revealed I have progressive encephalomalacia (brain scarring) in my frontal and parietal lobes of my brain, but my doctors are unsure if the rate of progression will slow down or accelerate in the future and what my future holds as it continues to progress. There is a lot of uncertainty in my future with this, and the one thing that would stop it would be removing part of the brain that is affected. This is something I would never consider doing as I think the potential risks far outweigh the benefits, but nonetheless remains something that weighs heavily on my mind when I do not keep myself busy. I will have to face whatever this means for me when the time comes.

Agree with @GregCA with trying to seek multiple opinions on the Labyrinthectomy if you can as I did for my neurological issues in the past.

Best of luck moving forward.

 

[MSHBD]

Hi @oceanofsound26 oh my... Sorry to hear that. My opinion for myself I would not remove part of the brain unless it was the last resort. I'm sorry you had/have to go through this. I am still researching on mind and had two different ENT drs tell me the same. Unfortunately, 4am this morning I had another attack. Hope all is well with you today and I appreciate you taking the time to read and reply to my post.
Sincerely MSHBD

 

[eagerUser]

Hi,

I just came here to say that I am so sorry @MSHBD @oceanofsound26
Only if I could help and do something. I hope you two find peace and good luck.

Regards,
Eager

 

[MSHBD]

Hi @GregCA I will certainly obtain more opinions on the surgery. Although it has a long recovery period, it almost sounds to good to be true. I was always told there is no cure for Meniere's Disease. However I'm now being told if I have the labyrinthsectomy, it will all go away? Wouldn't that be a cure.... sort of speak? Not a question really more of a comment. Thank you for taking the time to read my post and respond. If you come across any further posts, forums or info please feel free to share.
Thank you MSHBD

 

[MSHBD]

Hello @eagerUser thank you for reaching out. I have hopes that they're is something out there that will help us (everyone) suffering with these symptoms.

 

[GregCA]

However I'm now being told if I have the labyrinthsectomy, it will all go away?

Well, that's the perfect outcome, yes: no more vestibular problems. But along with that goes all your hearing too. No more hearing at all from that ear. Which could mean quite severe and unmaskable tinnitus. Consider that surgeries don't always end up with a perfect outcome, too.

Finally, the reason I mention it's a one way door is that there are quite a few drugs that are meant to regrow hair cells in the inner ear. I do not know if they will work for verstibular function, but if they did you would not be able to take advantage of them for hearing or balance.

Quite a predicament...

Good luck!

 

[glynis]

Hi there, I'm a 42-year-old female. I also suffer from tinnitus due to Meniere's disease. I also suffer from severe vertigo. I've had this since 2009 and it's only gotten worse. I also wear an ear plug in the affected ear as sounds are excruciating. Reducing or cutting out all sodium, caffeine, alcohol will lower the tinnitus symptoms but will not make it go away.

I previously had surgery in my inner ear and had a silicone implanted however I believe it's no longer working.

I am now being told I need to have the inner ear removed in order to stop my vertical attacks since they are so severe.

I'm no longer able to do many of the easy things in life for long periods of time for example work, drive, use computers, read etc. It makes me extremely dizzy in my eyes go side to side and I become very sick.

I've been researching this 2nd surgery but no luck.

Have you heard of this?

Thank you,
MSHBD

I would ask your doctor trial you on Cinnarizine 15mg 2 tabs 3 times a day, no more than 4 times a day, before going to the drastic operation removing your inner ear...

Wishing you the best of luck.

love glynis

 

[gerhei]

Hello @eagerUser thank you for reaching out. I have hopes that they're is something out there that will help us (everyone) suffering with these symptoms.

Hello MSHBD,

are you aware of the treatment of the vertigo attacks in Meniere's disease by Methylprednisolone? The study published relatively recently in 2016 is called:

"Intratympanic methylprednisolone versus gentamicin in patients with unilateral Ménière's disease: a randomised, double-blind,comparative effectiveness trial" (downloadable under the following link: https://www.researchgate.net/publication/310473482_Intratympanic_methylprednisolone_versus_gentamicin_in_patients_with_unilateral_Meniere's_disease_a_randomised_double-blind_comparative_effectiveness_trial)

Summary:

"In summary, steroid injections are a non-ablative, safe, and effective treatment for refractory Ménière's disease. Patients and clinicians have a choice of two effective treatments, but, on the basis of clinical knowledge and patterns in our data, either drug might be favoured in different circumstances. For instance, for a patient with no geographical access to repeat injections, who is not afraid of a gentamicin-induced vertigo attack, and who does not rely professionally on hearing (eg, a non-musician), gentamicin might be appropriate. For a patient with easy access to further injections who is concerned about any further hearing loss and who does not wish to experience a vertigo episode after gentamicin injection, intratympanic methylprednisolone seems more appropriate."​

The study was evaluated by several researchers in Germany (I was interested in their opinion about it since I live there) and all the evaluations seem to confirm that the injection of methylprednisolone in the ear is successful in reducing the vertigo attacks by up to 80-90%. This is similar to the injection of gentamicin, which was and probably still is used in most cases. However, gentamicin has a high risk (I think about 20%) to lead to partial or complete hearing loss.
It seems to be unclear why the medication works but it is considered a good therapy to significantly reduce the vertigo attacks without inducing hearing loss.

Let me know your thoughts.

Best regards.