Hi all. There has been a change in the last year on LWTN. Most of it has been good, but some of it has not. Up until a year ago this site pretty much was a try all the treatments and do the best you can until you have a surgical solution, and then have your MVD. That's a bit of an overstatement, but not an unfair observation. TN is a horrible condition, of that there is no doubt. But TN is not disease it is in simple terms the description of the results of an underlying condition with multiple causes. So thoughts theories experiences and YES opinions that were once "forbidden territory" on this site have been allowed in. But it has gotten a bit out of hand, especially with a few posters. What has been forgotten is that this is FIRST a place to share ones own experiences with others that are experiencing the same in in do doing so provide support.
So first a bit about me. I have been diagnosed - twice with TN. Mine is under control (today anyway Knock on wood) MVD was recommended, I refused. The reason I refused is that all though trained in the procedure, I had added it (type 1) to my personal list of "neurological conditions" that just don't always make sense. Chiari, and Eagle also on that list. Why, I kept asking myself, are more people with an elongated styloid process (Eagle) Brain tissue herniated into the spinal canal (Chiari), blood vessels resting on the Trigeminal Nerve (Type1 TN) totally symptom free than symptomatic?? Then I asked myself why don't simple straight forward surgical procedure always work. Why are some patients helped but rarely if ever long term (seven years or more) Why do others get worse, and still others not helped at all?
Those are the kinds of questions (and the fact I lost use of my left arm/hand) that moved me into research and later teaching) While myself I couldn't bring myself to do those procedures and have testified at a number of hearings civil, professional licensing, and even criminal against "surgeons" who did these procedures too often and with poor patient selection, there are thousands of patients who have been helped by them. There are also a number of docs adept at doing those procedures as well as knowing when to apply them. (Far fewer than there should be)
Face it even a few years of relief from TN pain is often "worth it" what ever the procedure. I would NEVER and I know what I am talking about, would ever question a patients choice of treatment the way it has been here of late. (my rather brusque communication style may make it seem thatway) I would want to make sure they are educated choices. But the choice is theirs and needs supported No one needs beat over the head by someones personal theory (even if based on a narrow professional experience) Several posters have been contacted by the mod team and asked to "cool it" I hope they do. Despite it all they do bring some good stuff.
I got answers for my TN, BTW and I am very glad I didn't have the surgery even though it was "type1" The real cause in my case was inflammation from an autoimmune "arthritis" It wasn't until the third MRI and my demand they pull the STIR sequences, that they saw it. (Blood work was negative of inflammatory process) Good inflammation control - no TN. (that and the same meds most of you use or have tried)
Right now there are several pushing for petitions etc for opiates. That's been allowed (though discouraged) Because of the dissociative effect of opiates, they ALWAYS make chronic pain either worse or increasingly difficult to treat. None the less, there are those few for whom nothing else works, that have some measure of a life because of them. There is no reason to "debate th issue" Nobody else's shoes really fit us after they have been worn a while
Discussion is fine on a support site, even disagreement BUT say it once and stop. We provided a spot in the "backroom" for those who insist on debating. Take it there OR if you insist on bringing it to the main pages, a single keystoke will have you taking it elsewhere. At the very least when discussing these topic PLEASE don't make it specific to a particular member or patient. You simply don't have enough knowledge about anyones specifics to be "prescribing" That being said this is not the worst I have seen it. We had a site where they were reading each others studies and posting their MRI's for discussion and the mods (former mods) were actually directing "staffings"
Stating an opinion ONCE on an internet forum (or in life) instead of coming back over and over in a single thread as opposed constantly defining and reinforcing and trying to drive it home is simple good manners. MOST people don't need told. They realize that carrying on a debate with in a thread (especially when its not with the OP) and thus hijacking the thread is the height of poor manners. Everybody gets caught up occasionally. Those who do it regularly are considered Trolls no matter what their stated purpose. Nobody wants to read it especially the OP. Sadly we don't have an ignore option on this format so we can opt of of seeing posts from individuals who we don't want to see them from. We do on the new format. In fact members can flag a post they don't like and when it receives 4 flags its automatically hidden until mod review.
I know I have said this before, but very soon This community will be joined with our other facial pain community (watch for the announcements) One of the main reasons is to increase the sharing of experiences for all. The surgery/no surgery debate should be the least of discussions. How to live with this dang thing should be............. Their should be "life" beween DX and treatment.
TJ