Hi Everyone. Back in March i had a R laby due to my hair cells in my right Labyrinth slowly re-growing and giving me grief. Unlike in the past i can now longer absorb Gent through my round window into my inner ear as i have a CI insitu (the electrode and tissue packing to prevent Endolymph leakage appears to prevent any Gent from being absorbed). Unfortunately i have ended up with non-stop brain zaps is the best way to explain it from my right ear. I get these pulsing zaps anywhere from 4 to 10 times a minute non-stop (except for brief occasions where it stops and starts by itself). I have been getting these since June and its like water torture. I am a Registered Nurse with almost 18 years experience with a good amount of that in ENT. I have never seen it and my specialists in Sydney have never seen it. I have fully compensated from the Laby (gent only destroys the "regular" vestibular hair cells, but the irregular hair cells remain mostly intact - so when i had the Laby it was basically like going through the gentamicin treatment again). We have trialled High dose tegretol without success and then added full dose Cinnarizine into the mix to approach it like a Dx of Vestibular paroxysmia but i have had no luck in settling my symptoms. What i am seeking is input from those who have gone through a VNS. Short of the usual compensation to vestibular loss, how did people recover with regards to all other aspects of the surgery? Where there any complications? I seem to be a bit of an enigma for rare complications (suffered complete R sided facial paralysis 5 days post my laby which ended up being caused my the re-activation of the chicken pox virus which attacked my facial nerve - thankfully high dose pred and antivirals had me fully recovered on about 21 days). I am trying to hold off on any further surgery until into the new year given how serious a VNS is with the opening of the cranium and am seeking any advice from those who have been through a VNS MANY THANKS in advance Dave
Hwy Dave, You are really having a rough time of it. A lot of people have had vns surgery I don't know if many of them post now. You can do a search on the old forum archives might be your best bet and then pm someone.I can think of a couple of people. How do they know the hair cells are regrowing? I too may have a rare variant it is turning out. So i know what you mean. I wish you luck! James
Hi James thanks for your replies. My right ear was diagnosed as the culprit through VHIT testing and also the infrared goggles i have at home that record my eye movements when i am suffering from the vertigo. I will do a search. Many thanks
Dave..'fraid I'm a bit confused here (wouldn't be the first time)... You say you had a labrynthectomy of the ear? If so, there's no Vestibular nerve left to section, as it was severed and the area packed with gentamiacin to make sure it was completely dead. Have you considered that the CI implant could very well be causing the issue? Also wondering which Dr. did the Laby?
Hi Mike thanks for your response. This is not correct. The labyrinth has been removed via the bur drill via a mastoid approach that does not enter the cranium. The 8th cranial nerve is still intact, just the end is damaged where it terminates at the now non-existent labyrinth. I appear to be suffering a type of Neuralgia from the damaged end of the nerve where my labyrinth once existed. This is all external to the cranium. The nerve is still completely intact inside my cranium and this is where the VNS procedure comes into play In theory by severing the nerve just before with the vestibular and cochlear input nerves become one at the 8th cranial nerve it should hopefully stop the neuralgic impulses that i get 24/7
Sorry you are experiencing this. Over the past couple of years I have gotten some brain zaps - but they are more random. Can't even imagine several per minute. I hope that you find your solution soon.
I had skull based surgery to remover a tumor on the 8th nerve, perhaps similar to the vns but for a different reason. I recovered well though i lost my hearing because of the tumor's adhereance to both parts ot the 8th nerve. My advice is pick your surgeon carefully. Get someone who has done this many times at a facility where it has been done often. Have a detailed discussion beforehand on what his success rate is and how he defines success. Ask what approach will be used and what the likely wide effects are (head aches, hearing loss etc). Who the dr is and what his experience is matters a lot.
Hi There. Thank you for your reply. Yes they are wearing me down a lot psychologically. especially as i work as an assistant Nurse manager of a busy 48 bed ward. Even as i type i am getting a zap about every ten seconds Regards, Dave
Hi June thanks for making contact So i assume you possibly had an acoustic neuroma? Absolutely agree with you re: surgeon choice. I am waiting for one of other ENT's (not the one who did the surgery) to contact me re: what is going on and his recommendation for the best Neurosurgeon in the state. I want to hold off on the operation for as long as possible to see if it subsides but at this point it doesn't appear to want to
Yes, acoustic neuroma. Does your previous surgery leave you the option for a cochlear implant, should the need arise? Mind didnt although i dont think they had any choice in the matter. Later, i got cochlear on the other side. I have done well with antivirals and allergy treatment but for a while it looked like i might lose my hearing in both ears and need a CI. I had my an surgery so long ago (1997) i dont think that was a thought then.
Taavinen, I found your original post to be interesting - I went through some post-laby problems somewhat similar to yours (though no where as bad as you describe). I thought I was the only person ever to ever experience something like this! I had a similar problem (yeah, brain-zaps, I don't know what else to call them). Post-laby, things were just fine for about 15 months. I felt fully compensated, and rarely ever thought about Menieres or my laby surgery. Then quite suddenly, I started getting these very quick zaps (felt like an electric current in my brain). They would only last for a second, or even a fraction of a second. Initially, I was getting 4-10 an hour (I can't imagine getting 4-10 a minute). Went to a local ENT, who was convinced something was up with my 8th cranial nerve and started speculating on a VNS being a solution. I ended up going back to where I had the laby (UC Davis) - they were at a loss to figure this out. I eventually got referred to Stanford, but again, endless imagery and testing proved nothing conclusive. They didn't know what to do either. At some point, I ended up seeing a different local ENT. Interestingly, he was convinced that it was nothing that developed physically, post-laby, but was some kind of weird ocular-vestibular interference that developed months after my laby. It's a long story, but over time, I was convinced he was correct. My brain was having trouble making sense of visual input and reconciling it with my new vestibular situation post-laby - the confusion manifested itself in these irritating brain zaps. The ENT was trying to get me a referral to some specialists that he thought could help with this but, gradually, over a few months, the frequency of these zaps started winding down. It's now two years later. Do I still get them? A few, but no more than 4 or 5 a week. And now I seem used to them and rarely ever even pay attention to them when they happen. I guess I now know what they are and realize they never progress or lead to anything more complicated. Looking back, it's all good. I would have the laby again in a second, no hesitation. Obviously, we are all different, and your situation (and cause) may be entirely different than mine. But the one caveat I would throw out is to make damn sure your docs feel a VNS is "the" solution.
This may or may not be related, but brain zaps are quite common for people getting off of anti-depressants or benzos. I know that some Meniere's patients take them, so if you took them, and are getting off of them or reducing your dose, this may be causing the brain zaps. Long shot, i know, but worth looking into if you fit that profile.