My MM started in May 2015. Shunt surgery lessened greatly the frequency of severe 12 hour spinning attacks. But still had almost daily moderate dizziness. Have had 3 low does gentamicin injections. Perhaps they've helped a bit, but not enough. Doc and I have decided to do a VNS. I'm wondering if I should have a 4th gentamicin injection. But my doctor says the injections really should have worked after just 2. He's a well respected guy from the House Clinic. I've searched this site, but haven't found much on VNS. If anyone can talk about their VNS experience and outcome, I'd be so thankful. Or if anyone can just link me to discussions about it. Sorry, I've spent an hour looking but just can't find much on it here. Appreciate any help. I'm pretty scared to be honest.
There have been some discussions of VNS versus laby here if you search the threads. It seems that VNS is quite a bit more invasive and has a slightly lower success rate. Also, a laby can be done in a way that preserves future hearing aids. Bulldogs can tell you more.
Pupper, On the home page, third red highlighted topic down, you'll see Old Forum Archives. Search VNS there. Lots of stuff to read. These are old posts from before this newer board, so it's read only and many (almost all) of those members have moved on. I've had a VNS. If I can answer any questions for you, shoot me a PM. Cheryl
I had surgery for a benign tumor which in effect was a vns. It is a brain surgery. You need an experienced neurosurgeon with a good track record. Ask a lot of questions regarding experience, outcomes, how the surgeon defines success etc. Second opinions from another practice are very reasonable. If your other balance nerve is good, the brain can adjust to losing one. It is a tiring recouperation period and it takes months and years to get back comp,ete balance (bike riding, ladder climbing, that kind of thing). You may never have good balance in the dark. In my case, i was 49 at the time of surgery. I went back to work(office job) in 7 weeks. My rehab was mostly just a lot of walking. I used a cane for a few weeks. By the time i went back to work, my walking seemed pretty normal to most people. Took me a while to fel confident enough to ride a bike but i did and have ridden thousands of miles on rails trails since then but to this day would not ride roads with traffic. Took a long time til i could turn around in the shower with eyes closed but i can now. Still have touble walking in the dark. I had a very good outcome. Never had a headache or other side effect afterward. My life went on pretty much as before, keeping in mind I did not have a job that required physical dexterity or balance. But this is a big deal operation so you should ask lots of questions.
The vans scares the hell out of me.... good luck!!! I had the laby and it was basically outpatient surgery, and is more successful, easier etc... Vans is brain surgery while laby is ear surgery. Good luck!!!! I am sympathetic to the laby
I would also be scared of the VNS and would do the laby if i had to choose between the two. VNS comes with some pretty serious risks, including permanent headaches, leaking CSF fluid, and facial weakness. And one study claims that the failure rate can be over 10%. Make sure you get a REALLY good surgeon. http://www.dizziness-and-balance.com/treatment/vn_section.html
Thanks for the responses everyone. I'd kind of given up on this thread. Almost forgot about it, ha. And thanks for the link directions Cheryl. I will message you soon.