I just had a message from a lovely new member and she mentioned that reading medical books can be scary, I agree to a degree. However cold facts have never wormed their way into my heart and brain in the same way as reading some of the true life stories here.
What say you?
For me it is scariest hearing about the personal experiences of people, sometimes the desperation is just heart breaking.
Greetings Jackie,
For me Medical books and other literature can be to clinical and full of stats. This is helpful but reading personal experiences brings to light what the monster does to people as only one who has felt it's wrath. I can relate to personal experiences easier than books. The stories from people with tn are scarier and like Trish said defiantly heart breaking.
Scott
Great question Miss Jackie. Both shake you to the core and scare you but the personal accounts, while breaking your heart, gives hope as well. If it were not for the personal accounts I read on this site, I may never have gone through with the MVD. Though not perfect, I am 100% better off now than I was before the surgery. Everyday I live pain free, I live for those who still suffer.
Personal experiences of people are what really scares me. Sometimes I think I shouldn't be coming to LWT because reading about pain so bad that people would do just about anything to get rid of it makes my own pain worse. At the same time, these pages are very helpful and people so kind. I don't really read medical books just an occassional article in papers or magazines - usually they make TN sound like a horrible disease which is however easily treatable with pills or surgery.
The personal stories are the worst but more accurate I think. Everybody's experience is different but it also gives me a more informed decision on what I will do in the future. It's heartbreaking and so near.
Thank you so much for these replies.
Trish, I agree the heartbreak is so bad.
Scott, I agree, stats are cold, true experiences are more easily understood and felt.
Miss Bobbi, I am so thrilled that the positive stories we read have led to your being well now.Your sentiment about your wellness being for others is so kind! Still soooo happy for you!
Oldriska, For me the angst of reading about the agony that other members endure is offset by the friendship and support I gain here. The press rarely do TN justice.
tkal, It is infinitely fascinating to read everyone's history with TN, we all react to meds/surgery in a different way and all need love and support :)
The first specialist I saw told me to go google about tn, because he does not treat that as a ear nose and throat doctor, and that is what I most likely have. Wasn’t that nice of him (very sarcastic here)? So when I got back to work and googled about it, it did scare the crap out of me. I cried and got the shakes; it scared and up set me so bad. That said, now it is the personal stories that I find so troubling. I hate that others suffer from the same affliction as me. The posts of uncaring doctors, anyone with that is having a rough time, and so on. Yet in a strange way I find comfort that others are going through the same awful things as I am. I can understand why at first sreaching about tn on google (or what not) can be scary, but as you make the journey with tn it is the personal stories that scare you the most. There several posts here that make me cry.
I absolutely agree with everything you say Kari. I have shed many a tear for others when online here.
I think reading some of the stories on here is the scariest, at times it makes me wonder if I will ever be well again. But I have also learned a ton from the other members and also know I am not alone in this.
I believe the people on this site actually know more than the medical journals can provide.
Wendy
Wendy, you are so right. How can a Dr fully understand the 24/7 effects of chronic pain unless they too endure it. They just understand medical stuff we don’t know or think about. They don’t have a clue of the reality.
Sometimes I avoid certain threads -- I'm afraid to read about certain things, because then I have more to fear. But at the same time, knowledge is power. It's a balancing act for me.
Wendy,
The last few appointments I’ve had, I starit up told my doctors at this point my knowledge most likely surpasses their own.
I know what you mean Crystal, I once cried at something written here. I have to keep in perspective that what happens to one member may not happen to all of us, fingers crossed!
crystalv said:
Sometimes I avoid certain threads -- I'm afraid to read about certain things, because then I have more to fear. But at the same time, knowledge is power. It's a balancing act for me.
Good point, today I had to see another specialist about a hand problem I have, it has been masked because of the gab I take for TN. We chatted away and I could tell he was surprised at my neuro knowledge. You will for sure know a bazillion times more about TN if you have it!
Kari said:
Wendy,
The last few appointments I've had, I starit up told my doctors at this point my knowledge most likely surpasses their own.
You know the one thing that Hopkins told me was to keep up on this site, they felt that this was the most informative thing for everyone with this disorder. Thats some heavy duty praise right there and says alot! They even told me that the average neurologist had no clue how to handle this disorder and that most had the wrong info. When I was diagnosed I was told this would just go away in about two weeks, once I researched this site, well it scared the crap out of me, but at least I wasnt sitting around waiting for it to go away! I got pro-active at that point and feel that had I not read this, I would be lost right now.
Wendy
Thank you for that Wendy. I have just shared your comment on FB, anonymously of course! It makes me proud to be a member here!
crashgirl said:
You know the one thing that Hopkins told me was to keep up on this site, they felt that this was the most informative thing for everyone with this disorder. Thats some heavy duty praise right there and says alot! They even told me that the average neurologist had no clue how to handle this disorder and that most had the wrong info. When I was diagnosed I was told this would just go away in about two weeks, once I researched this site, well it scared the crap out of me, but at least I wasnt sitting around waiting for it to go away! I got pro-active at that point and feel that had I not read this, I would be lost right now.
Wendy
I think the medical literature is the most frightening because it so frequently just plain inaccurate (to put it mildly) and sometimes just plain wrong! I have also read some treatment protocals and they show a lot of ignorance as well!
I think it is very important for people who have been successful in finding the right medication for them or who have had successful surgery or alternative treatment that has helped to keep coming back and sharing on here. There is hope are there are success stories. Lives can improve, I think that is so important to know for newcomers and long timers who are loosing hope. This is why I prefer to read real life experiences.
I have been on here for just over a year ( newcomer really) and I have followed threads of people who are in so much pain then gradually you hear their pain is easing and then they disappear! I know that is a good sign, but please come back and tell us how you are, if gives everyone else hope.
Great points girls, I agree we have to try to be positive and sift through the worrying and try to keep a positive perspective.