I had skull based surgery just over a year ago; endolymphatic sac decompression and clipping. A last attempt to fix the left more severe side of my Ménières. As a bilateral sufferer it’s tricky as one ear triggers the other. My left was worse so I went for the surgery as nothing else had helped, I was maxed out on daily anti sickness, and even taking anti sickness prescribed for those on chemotherapy, betahistine over the recommended daily amount and Valium with strong sleeping aids when required. Amounting to about 15-20 tablets a day. I had had the dextamethazone injections every three months through the ear drum they did not help much at all. Not pleasant either I might add! Maybe localised relief for the first week or two. So surgery seemed the only option.
It was the wrong option for me… I was left with no vestibular function at all and completely deaf. I needed to rehabilitate myself to walk again which took best part of a year and now cannot eat all day due to sickness of moving around even though I can stay up right some days the movement and imbalance is such that I can’t keep food down. My brain can’t process the movement and what’s going on. I eat one meal at night and suffer frequent attacks. That’s not going into the brain fog, word finding difficulties and generally feeling pretty useless. I used to be cleaver you know! A teacher… really.. my god! When… can’t remember! It seems so far away. A different life.
The tinnitus in my deaf ear is crazy loud and pressure and pain at times unbearable. I don’t think I have had many good reports of people who have had this sort of surgery successfully. Shunts, decompression, clips! Please make contact if you have.
I know Dana White MMA had the shunt surgery and had a similar experience to myself. He now has had stem cell and is in remission. The very thought of being able to be remotely normal is just not going to happen for Ménières sufferers. The cost too much money to contemplate.
Ménières Suicide or Survivor 
Hi
Fellow menieres person here.
I started it age 17.
In 37 now.
My journey is different to yours. Back in those days the ent just said there was nothing they could do so I just got on with it.
I am left side totally deaf. Bilateral tinnitus. Fluctuating hearing right side.
Vertigo fortunately was only active for about the first 10 years.
All I can say is don’t give up. The brain is involved in this disease and fortunately how brain is a more plastic organ than the ear. That is it learns to adapt to cope.
Sorry your surgery didn’t work out.
Have you been offered vestibular rehab? Have you seen a tongue device? It was used in a lady who suffer damage from gent
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Hi Anna, I thank you so much for your response and taking time out of your day to do so. I am sorry it has taken so long for me to respond I have not been well enough to do so.
I have had vestibular rehabilitation a few times in the past both as an in patient and outpatient. So when my skull surgery failed my constant was at a loss as to what to do. He knew my vestibular system was destroyed along with the hearing during the operation.
I have always been a fighter both mentally and physically having trained in martial arts since being a young child up until the Ménières started. So I knew it was up to me how much I could endure to get back on my feet. Believe me it was a battle. I have fought to walk again! But I have reached a Plato where my brain seems to be stuck, the vestibular imbalance from the ear surgery triggers the other ear. My brain can’t process what is going on. I have retrained it massively from being in permanent attack after surgery. I couldn’t even move. So in that sense I have come a long way. But I’m very interested to know more about this device you speak off!
Many thanks again,
Ali x
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