Retaking Control of My Life

So I guess I just have to get used to people advising me to go under the knife? Okay. But yall are going to have to listen to me pose questions in response.

Truly honest questions forthcoming. There are flaws in how you are thinking of the passage of time and the value of your experience and knowledge.

You DIDN'T have the knowledge then that you have now. How could you? Time machines have not been invented yet. In making such statements, you are in essence offering me the value of your knowledge based on the assumption that it will prove useful to me, based on the assumption that my disease will progress as yours did and that mine will respond to various therapies as yours did. Yet my disease and yours could be very very different. Some of the most plausible theories I have read about this disease suggest multiple etiologies. Your assumptions are just that... assumptions. They are not based in fact. There are also therapies available now that weren't available 15 years ago. And if your experience with pursuing other solutions had proved fruitful as it has to so many others, many of whom got help from this forum, then what you think you know now would be different than it is, right? So do you truly advise someone still fairly early in the curve of this disease to pursue invasive radical sugery with very serious risks over taking lots of vitamin c(or whatever other alternative therapy) for a couple months? I can always proceed to invasive procedures later on. But I can't go back if I go there now. As I have said before. There is a reason your doctor didn't recommend a VNS or a laby when you first walked into his office.

A VNS isn't a cure all. I've read a little about it. It might actually make sense for me right now given the fact that I still have some hearing left in my bad ear and this disease is proving to not be mitigated with simpler solutions. But it's not full proof and there are serious risks involved. They can accidentally cut the auditory nerve in addition to the balance nerve and you are deaf. And I don't think even a choclear implant can fix that, can it? The nerve has been severed. They can accidentally damage the facial nerve, in which case half your face is paralyzed. Or, you can have anatomical anomolies that means SOME of the balance nerve resides in the auditory nerve strand, meaning they can't cut all the balance nerve, which they can't know before or during surgery. The only way you find that one out is after the fact when you are still having vertigo. In that case, you would continue to experience some of the symptoms of this disease. You can also experience bleeding or hemorage. Infection. Lots of risks.

Not to mention that thanks to Obamacare, the only insurance I can now afford is a high deductable plan. So getting a VNS is kind of like buying a car. I'll be paying it off for years. God help me if I should have other medical expenses for one of my kids or something. I could go bankrupt!

Thanks for sharing your knowledge. In doing so however, a number of your assumptions are flawed.

For what it's worth, I WILL have by life back one way or another. I am set on my course. I will give these alternative therapies a certain amount of time. If I am still experiencing debilitating symptoms, I'll take more dramatic steps. But I'm not going there right off the bat. I would like to not be dizzy, have my hearing and NOT have someone cut my skull open or inject harsh chemicals into my ear. I don't want much. It's a simple request. lol And if I can have it, then I WILL have it. There is only one way to find out.

Thanks for your input.

 

I never asked you to not post about your success. Just not on the thread I started detailing my attempts at alternative resolution wherein I have now repeatedly stated I'm not having surgery first! Heck. I wouldn't even have minded if one or two folks posted and asked if I had considered labys or nerve sections. Now that we have for the 4-5th time established that I have, can we drop it please?

Why do you guys feel the need to like convince me that my approach won't work? As if I am some kind of fool for not taking you at your word and assuming that your experience will be mine...

I don't care that you share your success story. Another guy just posted a success story in the "Living Room" board and I posted that I was happy for him. He used gentamiacin injections and now has his life back. Good for him! I even had a couple questions and I asked them. I don't plan on getting a gent injection anytime soon, but I'm not saying he shouldn't have, nor am I upset he posted about it.

The issue is not that you guys believe in the things that have worked for you. I'm happy that they have. The issue is that I wanted this thread to be a fairly consice record of my attempt at alternative resolution. Good grief. We've now expended probably half of the posts in this thread on this exact topic. I've already said I don't want to go there yet.

If you want to go post your success story. Please do... somewhere else. I already understand my options and the chances of success with each.

For what it's worth. I can't imagine having been diagnosed in 1984. You truly were very alone and had very little to go off of. The internet has been one of the greatest equalizers in human history in terms of knowledge. Anyone can learn about anything, anytime.

 

Perhaps this is the issue here. This bit of your post is both right and wrong. Yes, this forum is for everyone. No, this THREAD is not for everyone. I started it so I could detail and dialog about MY attempts at alternative resolution. Anyone can post in it, but there is a reason it has a title and logs ME as the one who started it. It's an issue of... netiquette, for lack of a better word. As the internet evolved, forums like this developed a kind of code of conduct. I've posted in these kinds of forums for many years. When a person starts a thread, that thread kind of belongs to that person. Posting in that thread is analogous to walking into someone's living room. I don't walk into your living room and tell you how to arrange the furnature. I might suggest a different color for your couch, but you are the one who lives there so it's none of my business if you don't want to listen to me.

I am interested in hearing constructive comments and criticisms. I think I'm done with people trying to convince me to go under the knife.... "if I knew then what I know now, I would never have chosen a green couch! Totally wrong color." Well, I happen to like green.

 

Well see. That's part of the problem. I first learned about many of these potential alternate therapies from THIS board! I started this thread here because I hoped to have folks comment and contribute on my efforts because it seemed to me at the time that those with the experience to offer such commentary were again... here. And when I start posting about my attempts to find a solution based on that, I get all these people telling me that if they knew then what they know now.... they would pick the scalpal instead. Hense my confusion. I mean, have you read through the database here? Not a whole lot of information on labys or nerve sections. lol Basically because I'm sure the mods thought that this is primarily an information center for alternative approaches that aren't strictly speaking, always medically approved. If I want to hear about a nerve section, I'll go ask my ENT or hit some university hospital's website. There is MUCH information on the net about traditional approaches to dealing with this disease, which as we all know often SUCK. High dose vitamin C or antiviral? Not so much information out there.

You truly think I'm reading too much into all this? Because to me it feels like they are suggesting that my course of action is flawed. I've now had like 4-5 different people suggest that the course of action I am taking is not what they would do if they knew then what they know now. Should Solari have taken that advise when he started taking high dose vit c?

I'm genuinely confused here man. Like I said before, there seems to be a huge dichotomy of sub cultures here and that's why I used the term, laby preacher.

I'm not asking you all to leave. I'm asking you to stop trying to convince me to get surgery. That's it.

 

I am aware of the change in forum. And the moderators copied all the threads from the old database, right? Actually, no they did not, they only copied some of them. Why only some? lol

I looked through the old database and see 1 thread in 3 pages of threads that is overtly related to surgery. Perhaps the subject is discussed in some of the other threads but it is obviously not the topic of those threads and so I must conclude that the moderators obviously didn't feel it needed a whole lot of coverage here given the nature of this community and it's aims.

So my questions from my last post still stand. I started this thread with the hopes of hearing commentary from those knowledgeable in alternative treatments, especially the ones I am using. I didn't start this thread to be convinced to get surgery instead from the few folks who have had the unfortunate experience of not being successful elsewhere. Can you not understand my confusion and the source of my irritation?

I like the green couch dammit!

 

Yeah, how dare I have a problem with being spoken to condescendingly.

Bye.

 

7.5G of vit c today. I've also upped my dose of MSM, I was only taking half of what the bottle said I could. It's also supposed to be good for joints and my shoulders have been cranky lately. Too many pushups.

Tinnitus rather quiet today, very quiet in my good ear. Hearing decent.

 

To refresh your memory...

From the very first line of the very first post in a thread I started titled Retaking Control of My Life... Who's life? VikingMan's life. The "New Thread" link on the Living Room homepage is available to all if you want to go talk about your experiences. Why do you think it a good idea to post, unwantedly and off topic in someone else's thread? These kinds of forums tend to stay topical. Discussion can wander from time to time and that is to be expected, but you clearly don't really understand the nature of internet forums.

I intended this to be a journal. I detailed my medical history and gave the rough outlines of the protocols I am attempting to use. I did so with the intent of creating a record of my hopefully successful attempt at mitigating this damned condition without invasive procedures and also with the hope of hearing commentary and indeed even criticism related to my efforts from folks knowledgable in said efforts. Many people have now offered me the "benefit" of their own experience(though under false assumptions that MY experience will be the same), which I gracefully took the first few times. When you guys persisted and began to rudely post, I began to object and IMO, kindly asked you to stop suggesting surgery as I don't want it yet.

So yeah. Why are you still posting in this thread? lol Pitty there is no block function in PHP forums like there is on facebook. If you have no particularly useful knowledge of the things I am attempting to pursue other than they didn't work for YOU, then kindly restrict your comments to well wishes or nothing at all. I suppose I wouldn't object to commentary about the weather either. But there you are.