This must be one of the biggest Meniere's forums there is so must have a lot of people registered over time that have the disease, and that's a pretty valuable resource. Has anyone thought of sending out a questionnaire to try to tap into this? Just a "for instance", I'm starting to think about Shunt surgery, and if one of the questions from the questionnaire were to ask what type of surgery people had had, and if this made the situation better, much better, worse, much worse and so on . . . well, you can see where I'm going, no? This is just an example but I'm sure there is a lot of useful information you could get from a large cross section of the those that have this condition.
Good idea I think. Addressing your considering shunt surgery==I did have it on one ear in 2012. No vertigo since then. I wish I could say I'm fine==but the truth is, my hearing is now poor in the other ear--still no vertigo (that's a blessing). I have some mild balance issues--had therapy and that helped. But, I have daily head (not ear) pressure and mild tinnitus and ongoing feeling of mild to not so mild dizzyness--no spinning, just like I'm drunk and it makes me nauseated. I don't drink either. My neuro-ent says he has nothing to offer for these symptoms--sometimes they ease on their own. As to my hearing getting worse in the bad ear--He suggests a better hearing aid--and I just got a new one but not as good some more expensive ones. So, I take one day at a time--take an anti-anxiety drug to help deal with it and pray I don't lose my hearing!
You can simply search this (and other) forums and it will have plenty of information and posted experiences for you to get information/insights.
Hi Nicmgr I have searched the forums and yes, there is information and very helpful it is too. But it's also true having a database of the experiences of a large cross section of Meniere's sufferers would be an invaluable resource. Imagine you could tap into this database and could read the experiences of the hundred people who have had shunt surgery? Or the outcome of all those that tried Anti Viral drugs and so on. My background is IT and I studied with someone who set up a company dedicated to data capture and analysis so I think I'll get in touch with him to get an idea of cost. Then it would require the permission of the owner to access the email list then someone from the medical profession to help draw up a list of useful questions. It may all come to nothing, but then you never know...
The reality is this. Those that get relief, whether from my regimen, antiherpetics, gentimycin, surgeries, or any other treatment, simply walk away and don't read or post anything. They have no need. They are living normally now. How many read or post on this forum who never had Meniere's? Virtually none. --John of Ohio
This is in part my point, John. Some do and we have the benefit of their experience. Many don't, but given a well formed plea for help by sharing their experience, I'm sure a lot of those would. Especially as it is just these people that would know the realities of living with this disease.
Here is my History 39 years old, father of 2 toddlers, business owner with locations in 13 states came down with mm. Wanted to die and told my wife as much. Treatment History: Low Salt and directs (FAILED) Steroid injections (helped for a few months but ultimately it came back so FAILED) JOH and Antivirals for 6-8 months (FAILED) Shunt Surgery at Shea Ear Clinic in Memphis, Tennessee... ok for 3 months then (FAILED) 3 Gentamicin injections into rt ear at Atlanta Ear Clinic (no vertigo but felt awful all the time) (FAILED) 3 Streptomycin injections (more powerful than Gent) back at Shea Ear clinic in Memphis, Tennessee (FAILED) 41 years old Went to Emory (Atlanta), MEEI (Boston), House Ear (Los Angeles) and onto Johns Hopkins (Baltimore) Dr. Rauch at MEEI in Boston/Harvard looked me in the eye and told me "if i had an ear like yours i would just take it out and get on with life". He recommended the Labyrinthectomy. Called his friend Dr. Douglass Mattox at Emory and gave me the recommendation to come in the following Monday. I saw Dr. Rauch on a Thursday. Went to see Dr. Mattox which i had done before but this time i told him "This is no longer a Dr. to Patient relationship, i am your 22 year old son coming to you with menieres and want relief, i can't live like this anymore", He shut the door behind him and said "Son take it out and get on with your life" He said " i am sympathetic to the LABY" Just like Dr. Rauch told me. 3 days later i had the Labyrinthectomy. Fast forward 6 years and i am as normal as any other 46 year old man walking this earth except i am deaf in my right ear. I have little to no tinnitus (only notice it at night when everything is completely quiet), no pressure, no hypercousis and in fact i hear better being deaf because my brain is not pre-occupied with all the crap that was going on in my ear and now is no longer there. I snow and water ski, surf, ride bikes, just bought myself and my older son (11) a dirt bike to go ride trails together, travel with the Chief ect...... I am a normal person now, living a normal life except i am deaf in my right ear. I have basically forgotten all about menieres and there was a point i wanted to die. I am sympathetic to the Laby!!!!! Everybody i know that has had one has left this forum and gone on with their life. There is no reason or need to come here anymore. You can find their stories in the the old threads. Thats my Story.
One other thing..... I have low testosterone and have lost all interest in sex and find it highly overrated. 8)
That's interesting to read that you are a surfer, Bulldogs. I windsurf when I get the chance and I'd wondered what that would be like without the balance part of the ear in case I go for one of these types of procedure, so it's good to know you've still got the balance there. Thanks for sharing your experience too. I'm a way away from a Laby now but if ever it does get to that point, it's good to know that things are good on the other side.