Shunt surgery - HappyGrace and others?

Not sure if you are still on here HappyGrace, but I seem to remember the last time you posted you were headed into shunt surgery? Hoping all is well with you and wondering how things have been going.

Anyone else want to talk about experience with shunt surgery? I'm starting to consider it. Things with my bad ear have been up and down for a long time now, and mostly down the last 2-3 months. Just recently I'm starting to see some signs of MM in my "good" ear, which is obviously very scary but also limits future surgical options. It's not nearly as bad as my bad ear, but now have constant tinnitus on that side (quiet, very quiet, but it's there) and some minor fluctuating fullness. Bad ear dishes things up much worse.

 

I've been doing all or parts of your regimen for almost 3 years now... at this point down to just the lemon bio's. My current neuro-oto gave me a script for AV's a year or so ago at my request... wasn't quite up to the dosage from the House papers but fairly close... did nothing. He isn't willing to do more, and I recently got a second opinion from another up in Denver who also was not a fan of the theory. Nor is my husband, a peds ENT. If I had had even an inkling of improvement last year on them, I'd be fighting harder to try again but it was really no dice, after 2-3 months.

 

*Also almost 3 years on full strength of the lysine didn't help either I stopped that when I was having some kidney issues and we had to cut back everything I was taking to try to get them back on track. The culprit was likely the diuretics but I needed to start with a clean slate.

 

Thanks for the replies, all.

Jesse - what symptoms has it been helping you with? Have you struggled with aural fullness? Is it still there? For the past 4-5 months I've been in a never ending cycle of having building-to-extreme fullness (in bad ear) which culminates in a release of pressure and 2 hours of extreme dizziness. It isn't exactly vertigo by definition, which I had 5 or so real attacks of during my first year. This dizziness is still completely debilitating, in that I can't move my head to the left (bad ear is right) or up/down without complete instability. As in, can't walk. I don't have the visual room spinning part though, which is why I don't call it vertigo, but usually have vomiting and still cannot walk, take care of my kids, etc. It lasts 2 hours exactly every time. I also have a vague dizziness all day, most days, which I function through, and loud high pitch tinnitus. I have no hope that the T will go away with surgery, but if the other stuff can be stopped I will be one happy girl. Also are you back to normal activities 2 weeks out, like driving etc? I have three young kids who need to be taken care of and need an idea of how much help I'll need after surgery if I take the leap.

John - I started your regime right after you changed the rec dosage -- I was at the 3000.

Grace - good to hear from you, so sorry you are still dealing with the vertigo!!

 

Vicki - yes, I am actually still being treated for MAV (vestibular migraine) by the second opinion dr I am seeing, who believes most MM cases have a vascular/migraine root cause. I'm been on Verapimil for a few months, though unfortunately things haven't been getting better. I was also on low doses of Nortriptylene (sp?) but couldn't handle the side effects. My first dr had me try the migraine diet for a couple months but it didn't yield any results. Since it was pretty hard to integrate with my already lo-so, I eventually stopped the migraine diet. Oh I am also taking a daily baby aspirin for the migraine angle.

 

Also, I did have 5 really bad rotational vertigo attacks, all in the first year of my MM (I am 3.5 years in now).