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 