Hello

Thanks for posting! I’m currently in that horrible world of anxiety. Menieres has stolen most of my life so I know I need to do surgery. I’m waiting on the specialists, and don’t know yet what if anything will be offered. Scared of going through a surgery, scared that it might not be offered.

Keep us posted on your recovery!

 

Calygal. Good history, thank you.

How many gent injections did you get?

Yeah, ear operations screw with the way you hear things for a while, but things come back to roughly how they were prior.

6 days is a long time in the hospital, even for a VNS. That's hard going. So when you got home a week later, you couldn't move without assistance? Sheesh. Sounds like your nerve must have been near fully functioning prior to surgery, so after VNS the balance compensation period was/is especially hard for you.

Re your previous surgery. Seems like everyone who's had any kind of sac surgery is like, "ummm, it kinda worked, for a while, I think, but then..." I include myself in that.

You'll be fine. Keep us updated McGregor.

 

I had one in Sept '17 and one in Dec '18

 

Thanks Caleygal. I appreciate the support from all you fellow sufferers!

 

Anne T and pupper I notice almost every time someone posts about MD problems the same answer keeps coming up...gentamicin and or laby or other surgical procedures. And both if you to one extent or the other try to shy people away from doing much on antivirals.

Are you affiliated with any Dr(s) or services to give referrals?

 

??? I’m ON antivirals. No affiliation. I WISH I could speed along my own referral to get some help.

I really don’t understand your aggression, so will likely not answer anymore Clearing comments. Please don’t take my silence as some sort of admission of guilt or agenda-pushing.

 

nice try. there is no aggression. just the question and noted you did not answer.

once again - a simple question to you both:

Yes or No?
Are you affiliated with any Dr(s) or services to give referrals?

 

I know better than to stick my nose in here but I guess I am doing it anyway. I don't know Anne or Pupper outside of this board but I'm fairly confident they aren't affiliated with any sort of doctor or pushing someone's business. The fact of the matter is, while AVs seem to bring much needed relief to a LOT of people who post here (or used to), they are not the end all, be all. There are a good chunk of us who have tried that route and found little to no relief. And a further subset of us have gone a surgical/invasive route and HAVE found a good degree of relief. MM seems to be very individual to the person afflicted and we all have to find our own route to relief. I don't think anyone wants to undergo an unnecessary surgery, and we try to find the best way to avoid it, but for many of us it's really the only way out of this mess.

 

Thank you and I appreciate the response.
well said. and I agree, they are not the 'end all'...but considering the dearth of patients aware of this and some posters who are focusing on such a narrow response it just seems appropriate to bring it up. Perhaps that in itself drives a perception from my end.

if you look though at their history (which takes time i understand) you can clearly see their reactions to almost any kind of problem being the same thing. for them surgery first and antivirals dont work at all or dont work well ( at least the pharma ones) and look at this list of DR's we have at the ready that think and treat the same way.

I dont care about ideology or what they believe ....i only care about them being under the influence and trying to influence others who are innocent and would never know of other options.
Most people have never treated with the combo of olive leaf, monolaurin and oregano oil, just acyclovir fami and vala which are specific drugs not broad spectrum. We all put a lot into our conditions (time, sweat, money) and its hard not to have heart for the people coming up through the ranks as they discover this hideous condition. I wont expect anything but again its pretty clear whether to grab extra cash or whether their profiles are created solely for this purpose these folks are compromised. I guess we would need a paid sherlock to do all the work.

I had a good time in some parts here. but its too frustrating to watch so many be improperly influenced by these posters.
best of luck.

 

You're Nyynth level bizarre. LOL

 

Yes or No?
Are you affiliated with any Dr(s) or services to give referrals?

 

No. Unlike you, I haven't suddenly appeared among a community of afflicted people, to cleverly yet strongly promote a non-FDA approved, non-prescription "solution", then linked to a bunch of cheesy no-name startups who make those same concoctions.

I feel you do have Meniere's. And you're intelligent. So you could help. For that, I hope you stay. However, you seem very OK with leaving, (which is a "tell", as they say in poker. And I expected it). You're not the first salesmen to leave when they realize their pitches aren't working out.

Either way, I'm done with you.

 

Caleygal
So sorry your thread got de-railed. I hope it doesn’t deter you from hanging out with us.

How is your recovery from VNS going today?

 

"de-railed"?? This thread got thrown right from a cliff.
Caleygal-
We are at about the same stages, it sounds like. I've had the sac decompression, Endolymphatic shunt, gent injections, steroid injections. I've tried what seems to be dozens of medications over the last ten years. I tried the anti-viral route, and it felt like it worked for a while and then my symptoms came roaring back. My ENT is done with what he offers and said I should go see a neurologist and investigate if my current conditions are related to vestibular migraines. It's worth a shot, so now I'm starting a trial of Nortriptyline (an anti-depressant). I just started and it looks like it may take a while to kick in. The neuro says 4-6 weeks.
Whatever you try, just hang in there. It seems that most people have a few issues that string together and look like one thing or another. I definitely have Meniere's, but there are some additional, underlying problems.
Hope your journey improves for you.
Take care.
P.S. Not a doctor.

 

Hey Coach Betz
How’s it going with the nortriptyline?

I tried one dose of it and didn’t sleep well, felt quite agitated.

But I’m willing to give it another try... maybe!

 

Oops nvm - coach - plz post on the other thread thx!

 

Who is this Clearing person? It's like I'm on twitter or something.

 

Caleygal,
Back to your original question as I understood it —yes. My very first symptom was having the radio echo back to me—scary! And 34 years later I still have difficulty with music. Best wishes!