Neurologist recommends Shunt

Dr House told me it works really well for about 70%. If I remember correctly, it’s an out patient procedure, you can even fly afterwards, and is sparing to hearing. So it might be a good option to try if you still have good hearing. But it might not be the final solution in the long run.

 

My two cents worth...I don't know much about the shunt surgery so I can't comment on that. I had one gent shot and that I would not do again. I had hardly any hearing left and was hoping to avoid surgery. The gent gave me 8 months of freedom from vertigo. However after the gent I felt like total crap!! Light headed and my balance was off. My OTO said if you don't get relief from 2 shots most likely you won't from more. Because I was so sick of being "sick" I went for the laby after the one gent. Knowing what I now know and because my hearing was gone I would have bypassed the gent. Laby was the best decision for me.

 

Hi Fisherman! I had the shunt surgery on February 1st. My ENT told me that it had a ~65% chance of working. Basically it would work at first, but it was a matter of whether it would continue to work long term. Sadly, mine did not. I had a vertigo attack on March 17th and then a massive hours-long attack two days later. I had 3 more in the 2/3 days following...so it was safe to say I was back to my pre-surgery vertigo attack cycle. I have since started the JOH regimen and the B5/B6 regimen with really good results (no attacks!) although my ENT called my plan "voodoo." Ugh. But back to the surgery...

It is an outpatient procedure, you're correct. It's also not considered a destructive procedure meaning that you're not sacrificing your hearing, balance, etc. which is why I decided to try it. I will tell you that it's worth seeing if it works for you - it seems to for a lot of people. But know that your chances are only around 60-70%. Also be aware that it IS surgery and you will have a recovery time - not so much with balance (mine was fine) but just with the wound itself. I was surprised how much it hurt! I also couldn't hear out of that ear for about a week while it healed and all the 'gunk' got out. It gave me a window into what my life would be like if I lost hearing on that side (spoiler alert: it's not good). After 3-4 weeks I was totally back to normal. But then after 6 weeks, I was back to having vertigo attacks daily, so it didn't work for me. I don't regret the surgery because if it had worked I'd be thrilled I did it -- knowing that it did not work, I can now move forward trying to find something that will (and not always wonder if this could have).

I hope this helps! I'm happy to answer any other questions you have!

 

AmyLeigh
Thanks for sharing your experience! Very useful to hear what it’s like from someone who had the procedure.

 

Didn't work for me. Similar story to AmyLeigh. One annoying after effect was if anything touched my ear or around it, it sounded like when you press your ear up to a party balloon and start rapping your fingers on the balloon. ((THUMP)) ((THUMP)) (((THUMP))). Not nice. Weirdly when I had my 1st VNS a year later, the touch-thump effect went away. So at least my VNS fixed what the shunt surgery caused. I asked my VNS surgeon afterward if he took the shunt out or did anything to it, and he said no. He couldn't explain why the thump was fixed.

 

First off - it did not work for me. I had the worst vertigo if my life 4 months after the surgery. I lost another 30dbs that day alone. I believe the 70 percent they quote is nonsense.

Pupper is the first person I've seen to mention that noise following the surgery. I have the same exact thing. It is an air pocket created by the drilling of the mastoid bone. It is awful. I had a tube put in my ear two years ago and it helps the problem. But having a tube in your ear is no fun.

Wish you good luck in whatever route you go.

 

This is funny to me. I don't necessarily disagree with the ENT on that point, but I don't think what the ENTs are doing looks any less like voodoo. And theirs is quite expensive voodoo.

Frankly, I think a dietary supplement approach to strengthen the immune system and maybe counteract a virus (or whatever the immune system is fighting) is as solid an approach as "Hey, let's cut something out of there and leave a shunt and hope that works."

 

I thought I replied to this post but I either did it in my head or forgot to hit Enter at the end LOL. Trying again. I had the shunt done in Jan of last year. I was at a point where I was having daily, sometimes twice daily, vertigo attacks for weeks on end. Although it halted the vertigo, the results didn't last. It was back as strong as ever by late May. In July I had a laby.

As the others said, SUPPOSEDLY the success rate for 5 years is better than 50%. Supposedly. I haven't heard of a lot of people who are vertigo free 5 years out. That being said, it is a relatively non-invasive procedure so why not try it before something more drastic.

And yet another counter argument... as a direct result of this surgery, I ended up with classic BPPV. I had never had that in my 7 years of Meniere's prior. It was very specific type of vertigo, and I could intentionally bring it on my turning over a certain way in bed, or in general when lying down. I could halt it by changing position. If I let it keep going, it only lasted a couple minutes, not the hours long "regular" attacks I had been having. My neurotologist had seen or heard of that happening with a few other ear surgeries but he'd never seen/had a case where it was brought on by the shunt surgery. Lucky me. The laby did wipe out the BPPV a few months later. Just a heads up.

 

I had the shunt surgery about 6 years ago. It was successful, but for a limited time. After about 18 months, the vertigo returned. I then tried the Gent shots, first round of two worked for about 8 months after a recovery period of about 4 weeks. Then the dizziness returned. I tried one more set of Gent, but to no avail. That ENT said I was basically at the end of his treatment regimen. I was begging for any other sort of surgery that would help. He refused to go any further because my hearing was still "serviceable". I wanted the "VanGogh". Full on Laby, but no other ENT would do it because I can still hear. Now I've been shipped up to a Neurologist who is treating it as MAV. Little to no relief in these three months. I started on Nortriptyline, but that seemed to make the condition worse. Now on an injectable for migraines. It's only been three weeks, so it's too early to tell.
My biggest gripe is that if I had testicular cancer, they'd remove the testicle. Prostate cancer, bye-bye prostate. Appendicitis, so long appendix. Meniere's Disease, "Well, let's try and treat the symptoms rather than remove the problem." I realize that the Laby destroys your hearing. To be able to function like a normal person makes me think it would be worth it. I just spent 3 days in bed with the general dizziness, malaise, and seasickness that so many people complain about. They seem to be forgetting about our quality of life.
Sorry for the long rant. Just super frustrated, as I'm sure we all are.

 

Coach Betz have you seen an OTO (neurotologist)? My experience has been that ENT's just don't have the training that OTO's have. With the suffering you have it is hard to believe that there isn't an OTO that would offer you relief through a laby or VNS. I don't know where you live but if you could get yourself to a teaching hospital perhaps you would have more choices. I feel bad that you are unable to get the help you need to get on with your life. Good luck sent to you.

 

I've been through two Otolaryngologists, specializing in MM. They are both reluctant to do any more destructive surgeries because of my age and the fact that my hearing is still intact. It's just frustrating, as I'm sure you all know. Super, crazy roller coaster ride. I'm currently going to a neurologist, specifically for MAV. We'll see how that pans out.

 

Coach. VNS preserves the hearing. Maybe lessens it a little. I think I've mentioned this to you before. It doesn't make sense that the specialists you've seen don't know this.

 

Coach your quality of life really is what is important. Single sided hearing vs vertigo...I have lived with both and believe me giving up the hearing on one side was worth it in order to get on with my life. Perhaps that is the approach you should take when you talk with your OTO.

 

There are otolaryngologists and there are neurologists. The OTOs deal with the ear and the neurologists deal with the brain. What we need is someone who deals with the part between ear and brain-- that is, a neurotologist. Each medical specialist is so into their own silo that they really don't know how to treat someone who crosses borders. Please, find a neurotologist if at all possible.

 

To echo Clare in a way. Go to a clinic/hospital that specializes in dizziness and balance issues. And NOT one of the many small "Fix Your Dizzy" money-traps in your local strip mall. Go to a major institution with a long reputation. A Johns Hopkins. Cleveland Clinic. Mayo. House. A major dizzy clinic in Florida, Arizona, Texas, where there's lots of rich dizzy old people. The ear is a complicated mechanism. Don't rely on some local ENT to understand it. Because they'll have to pretend to know. Yet they don't know.

 

Barnes Jewish Hospital in St. Louis, Mo. has excellent Ent's and Neuro ent's. One is Dr. Goebel--specializing in Meniere's only now--I used to go see him--but before Meniere's. Then was given the name of another really excellent Neuro-ent Dr. James Benecke--so have gone to him for 11 years. He's in St. Louis also--and his hospital is MO. Baptist and he was with Barnes for several years.