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Gloves off - take it on

dilaurodilauro ConnecticutPosts: 9,842
edited 10/08/2013 - 4:17 AM in Chronic Pain
By now, anyone who has been a member for Spine-Health for over a couple of months I am confident they came across a few threads where it seemed like some members were going after other members and nothing short but a barroom brawl would start.

This happens on any online site, and many get real bad and nasty. But what makes it more difficult here, is that this is a community consisting of people who are in pain for one reason or another. When you have pain, your tolerance levels will be a lot lower than normal.

Many times there are conflicts between new members and older members. From the sidelines, I can see that both parties are not seeing things eye to eye. The new folks are looking for help and when someone comes down heavy on them, they retreat or worse attack. Then when an older member sees someone who is doing something really wrong, they point it out, perhaps too blunt, but none the less the truth.

I dont like calling our member names in public posts, but I think I need to for this thread. Terror8396(jon) has been a focus of many discussions. I've known Jon for a number of years now and I know he is a black and white person, says what needs to be said and is not worried about upsetting the cart. I appreciate that candid behavior, but Jon himself will tell you that at times I have needed to tell him to tone it down a bit. I think only when you have been here a while and seen so many come and go and have personally been through hell and back, it makes a difference. Jon, like myself is no stranger to Chronic pain. We've seen the good and we've seen the bad that comes along with it. Jon warns tells people about drug seekers, not paying attention to their doctor, etc. He says it in a way that might get the back of your neck hairs rising a bit. But honestly, I say those same things. Difference is that in my position, I need to temper my tone... But then again, even outside of this arena, I have a different style, but the message is the same.

Then as new people, the last thing we want to hear is being lectured, or being made to feel like we are addicts or worse.
Thats when resentment starts to sink in, And that is only natural, I can not fault anyone for feeling that way.

But lets try to live together in an easier way. Take each person's comments as for what they are, information and not personal attacks. But if you feel it is a personal attack, then I am telling you to take it offline, private message between members or to us. I will respect anyone doing it that way.

But when people start to use the public forums as a means of attacking another person, that is where I need to draw the line.

There really isnt much difference among us. Some have been just dealing with it longer. But it doesn't matter if its lumbar, cervical, thoracic, if we are black or white, come from an Asian country, whatever,

Pain does not discriminate..... I am just asking all of us to do the same when we deal with other member.

Thank you

Ron DiLauro Spine-Health System Administrator
I am not a medical professional. I comment on personal experiences
You can email me at: rdilauro@veritashealth.com


  • From the time I have been on here 2 weeks I feel like I have been thought of as a Dr seeking, doctor hopping, non compliant patient by a very small percentage of this spine world. I don't see the need for it as I have just come here for some encouragement to get through a difficult time, where the pain is getting worse and answers are slow to come. The other 99.9999 % have shown support and kindness, but I have been told you can chose to be non supportive if you want as long as we don't make personal attacks. When my posts are referred to as a "making a big deal" that is personal and demeaning.
  • catfishmanccatfishman Posts: 185
    edited 10/04/2013 - 6:13 PM
    Post edited by the Spine Health Moderation Team
    You agree not to submit or post material that is harassing, libelous, abusive, threatening, harmful, vulgar, obscene or otherwise objectionable in any manner or nature to forums on Spine-health.com.
    Consider this a formal warning. Personal attacks will NOT be tolerated.
  • I think a few of the moderators here criticize us members too often
    Making us feel intimidated to express what we truly want to say.
    I know members have left this forum because of this
  • or they might think that they have all the answers , or know what is best for every individual, now if they have there medical degree, i might strongly consider all of their opinions. even doctors do not know everything.
  • dilaurodilauro ConnecticutPosts: 9,842
    I want to know what as a moderator team we could better at and also, me, since I make new threads and posts so very often.
    I can say that as an objective of the moderator team, its not to make anyone feel intimidated, instead we should be the ones that make people feel comfortable .

    We have take a number of steps in helping new members on board. If you look at anyone of the moderators long introduction memo and links, it provides the new member with almost everything they need to get started. But I know that is not being read. People read what they want to read, if it's not a subject that matters to them, they pass it on.

    My team will break down walls to help a member who has come on board, read the Forum rules, become familiar with our FAQ and still has problems.

    Those that do not take the time to read the forum rules (which it was mandatory at sign up), I cant offer much help
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • dilaurodilauro ConnecticutPosts: 9,842
    if I did, I would be in a different field right now.

    My moderator team are 100% volunteers. And each of them have their own journey of spinal problems and chronic pain to deal with. I would not have it any other way. I want the people that watch and monitor this site have been in the same position as so many others. To coin the phrase, we walk the walk.

    I was offered some temporary help from the development organization. I appreciate that, but those folks don't have, nor can they really down deep understand whats going on in our lives.

    We try our best, we just hope that is helping others.

    But in truth, this has even gone off course from my opening thread. I want to create a stage where the majority of the people will be happy. I know we can never get 100%, but that does not keep us from trying.

    One of my simple views ( and I am pretty simple) is that when I or anyone else offers you a bit of help, a ray of hope, we acknowledge that.

    Remember, each day forward should be better than the day before. And if it isnt, lets identify why and make sure that doesn't happen again.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • stenosisRosesstenosisRose Posts: 489
    edited 10/04/2013 - 5:27 PM
    To the new members Are wonderful and very useful

    See, you have already determined that new members dont read the info provided.

    I read it all for example, so DONT assume anything Ron

    Like me, new members are here for support and encouragement but mostly for INFORMATION .


    Thanks to all of the moderators for theiir time and dedication to make this forum successful
  • AnonymousUserAAnonymousUser Posts: 49,671
    edited 10/04/2013 - 6:12 PM
    the memo and FAQ, but sorry my retention is not as good as it was when I was not medicated.
    I have read a lot of the new members post and I don't get the feeling that many are Dr Shopping or looking for ways to get their drugs because they have a bad habit. It does seem if someone mentions pain management, nasty commments will follow. It is important to validate feelings especially when people say they are in pain. Denying a person their feelings causes stress which causes more pain. I am not saying most aren't tactful, and I appreciate the volunteering moderators, but I agree with Rose, judgement and assumptions aren't helpful.
  • sandisandi Posts: 6,343
    edited 10/04/2013 - 6:23 PM
    I don't believe that I have all of the answers at all. I think that I spent considerable amounts of time trying to help you over the last few days.
  • You are helpful, Sandi. & I wish someone here had all the answers, that would be nice, but you would probably charge & we could not afford you (levity).
    You(moderators) may know certain people for long period of time, we don't, and we come here for support. And if every comment I make draws a response that references whining, or making a big deal, I find that a form of harrassment and far from helpful.
  • RangerRRanger on da rangePosts: 805
    Don't know if I'll come across as riding the fence or putting on the striped referee shirt but I can understand what Ron wants to see here and I believe he means well for everyone's interest.
    Mood swings affect most everyone, whether on meds or not. We are all different in most every way and we need to respect that whether we think it is right or wrong. There are times I'd like to say something but it may be cutting and I'll just keep it to myself because I'd rather offer positive support than agitate someone.
    I don't always agree with what Jon posts, I don't think he means to harm anyone, but he is entitled to his opinion. We have the choice not to respond to his post. I won't say Jon is totally wrong either, but sometimes it may sound abrasive to others.
    I've been on this site for a few years now and have seen a lot of really nice people come and go but that is life.
    I think we all should be less critical of one another and try and help these moderators continue to make this site successful.
    I can't do there job, without them it won't exist.
  • terror8396tterror8396 Posts: 1,832
    edited 10/04/2013 - 7:04 PM
    once again, according to the rules, 100% support is not guaranteed here. it also stated that if you don't like a post, ignore it and go on. no personal attacks are permitted. EDIT if i feel someone is out of line or i don't agree, the rules and EDIT say i can disagree. i don't insult and call people names. i usually have to keep my mouth shut and bite my lip when i read some of the responses to my posts especially when people do not get my point or ignore it. i will keep posting responses that some don't agree with and as long as i follow the rules then i am allowed to. like i said it is a free country and as long as i follow the rules then if you don't agree, ignore it and go on.

    Post edited by the Spine Health Moderation Team
    The moderators reserve the right to delete any messages deemed inappropriate without notifying the author
    You agree not to submit or post material that is harassing, libelous, abusive, threatening, harmful, vulgar, obscene or otherwise objectionable in any manner or nature to forums on Spine-health.com
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • goes both ways, people have the choice not to respond to my posts. But if they do and come off as abrasive, my mood might be a little worse. Thanks for your postitive support.
  • I try , and that's all that I can do. I've been a member of this site since before it become this site..in other words, the old forums that we used to have........when we moved here, I re- joined right away.
    I know that there are things that could be said better on the parts of everyone at times, Jon included but I also am well aware that whenever Jon posts anything, he has his "followers" who wait for him to say anything that might be considered offensive and jump on the bandwagon to engage in flames. If you read what he says in a detached manner, without letting personal feelings become involved, he does make valid points, that could be better stated than they sometimes are, but the points that he tries to make are in fact valid.
    Patients, in pain , need to follow the prescribing directions of their meds and doctors. You can't rely solely on medications to manage the pain, you have to use other methods, every day.
    Physical inactivity is going to worsen your conditon, your state of mind and your physical stamina
    Activity, whether it is working at your occupation, volunteering, or helping a friend or neighbor will help your mood and your sense of accomplishment, and therefore your overall mental well being.....
    Not everyone needs to quit work or be quite so fast to jump onto the SSDI, or LTD bandwagon.....
    The less time you have to think about pain, does in fact, effect your pain levels. If your mind is occupied, your pain levels falls or take a back seat in your brain, that helps you in the long run.
    A lot of time when Jon uses you in a comment, it is not directed at you, the individual, but you , the collective.
    People can't paint all doctors with a broad brush- they are not all bad or unethical or unhelpful. Just as their are great doctors and hospitals, there are also bad........we all know this.
    People can't claim that they are in a pain level of 10 and be posting on forums.
    And finally, as we have asked long time members and new ones, rather than get into a tit for tat, if you feel offended by something someone says, contact a moderator. Our pm's are always open.....we will take a look at it and if it is offensive , we will remove it /edit it, or take further action. When anyone chooses to engage in personal tit for tats, it makes it much more difficult to deal with, because we are having to deal with both sides throwing around a bunch of garbage , and one doing it 'in response' does not make it right either.
  • asked that the posters NOT engage in exactly what is happening on this thread right now. I have already edited a few posts, and will continue to edit any further inappropriate remarks made on any side of this discussion. IF YOU DISAGREE WITH ANOTHER MEMBER'S COMMENTS, EITHER IGNORE THEM OR SEND A PRIVATE MESSAGE TO ONE OF THE MODERATORS.
  • I'm also a long time member who rarely posts anymore because I do not want to end up in this free for all. I have seen new members scared off before they even got to give there history.

    And now my question to Ron, if I posted the exact same posts as Jon(terror 8396), would I still be a member of this forum? My own answer to this is I really don't think so.

    I ask Jon, why don't you let a new member make a few posts before passing judgement? You have every right according to the interpretation of the rules by you and Ron, but what do you gain by putting someone down before you know more than one paragraph about someone?

    When I joined this site it was much more cordial and people didn't pass judgement, or if they did they (as you say) ignored it and moved on. True drug seekers were always found out in the end, but we took the time to make sure who they were.

    This is my opinion and I don't believe I have broken any of the rules in making my point.
  • AnonymousUserAAnonymousUser Posts: 49,671
    edited 10/04/2013 - 8:30 PM
    I did not quit work, I was terminated before I even had surgery. Working in the hospital, any neck/back injury is going to be a liability, they don't want to pay if you get hurt on the job. No work comp, I was a victim of a distracted teenager. While I was at a red light she plowed into the back of me- oh how I love smart phones. Never had any back/ neck injury before. only time I remember having pain was in my lower back when I was pregnant. No disability either, I was a per diem employee.
    I am a volunteer reading tutor at my son elementary school, I tried the food bank and animal control, but too much BLTing.
    I walk 1-3 miles a day, because that is the only exercise I am comfortable doing.
    My pain is managed by diet, stretching, massage, PT, aromatherapy.
    The only time I ever had a pain level of ten is when I was passing a kidney stone. 9 was when I had gallstones and was first seen in the ER after my accident, on tylenol.
    Wish I could have all the DR I had last year, but the military moves them around, so I have to play the cards I am dealt. So I come here and vent
    I don't know if that was a general impression above, but It was not anywhere close to who I am.
  • AnonymousUserAAnonymousUser Posts: 49,671
    edited 10/04/2013 - 8:34 PM
    don't know why it x2
  • i did not mean or think i was making a personal attack, i was just stating my opinion, i did not name any names. i really do appreciate this website, has a ton of information, also i would like to thank moderators for donating all of their time, it has to be like a full time job for some. i apologize to you Sandi, it seems we were doing some bickering back and forth, because i was disagreeing with your opinion. i will try to go back to mostly reading on here, and not responding or posting.
  • I feel as a moderator and spine patient like us

    Thanks Sandi

    Love ya
  • My comments were not directed at you, which seems to be part of the problem in the ongoing issues with Jon or anyone else who might state similar things......the comments are general in nature, the collective you, not the personal you........
    I didn't state that you quit your job or that you claimed a pain level of 10 or anything related to you specifically....I said that Jon makes some valid points, and at times he could do a better job of being clearer about how he posts, and then I went on to try to state a little clearer what some of those valid points are.........You read into my response that I was talking about you .
    That is where the emotional detachment needs to come into play when reading posts and responses..reading while you are upset or feeling too anxious tends to make someone read emotionally , rather than objectively.
  • As I said to you in the thread in Pain Management, I was trying to help but apparently that was not what you were looking for and that's okay.
  • You are a good egg as well..............thanks for the support.....It's been a long night.
  • I have really found the site to be a help. I have directed other back sufferers to this site only to have them tell me the bickering and arguing back and forth was too much.
    I have been member of other support groups for different medical issues and while I wouldn't put this site as the top it is among the best I've seen.
    The one area that might improve the site is to provide a means of ignoring a member so that anything they post is not visible, you just see "post by ignored member" and you can choose to click on it and read it or continue to ignore.
    I am still in the early stages of my spine journey with eventual cervical and lumbar three level fusions to come. I hope this site is around as I believe it will be helpful when I really need it.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
  • for the helpful suggestion. We discussed that option and it might be time to reopen it for more consideration......
  • I have been a member since June 2012 so not that long and I remember making some really good friends on here and there are 9 of us who continue to talk online through FB and even phone. There was Bob who I spent weeks catching up on his posts, there were hundreds. He is no longer her and out of 9 only one comes on here occasionally. It is really sad. I had had my hand slapped by moderators, sorry guys, just got in the moment.. I could not do the job the moderators do here even if paid :) just seems the way people treat others has changed here lately and it is sad that the harsh words of one could change the whole dynamic of this forum. I agree about the ignore button. That would be awesome.
    Keep up the good work moderators, we need you :)

  • thoracic spine painthoracic spine pain Posts: 566
    edited 10/06/2013 - 12:21 PM
    This is just about the first time I have ever seen any of Jon's posts edited or moderated. I believe he posted what he liked (words edited by me), he is not stupid and knew he could get away with saying anything, no matter how inappropriate or personal. I think the perception was that he was being protected and the rules that applied for everyones' benefit seemed to be waived for him. I think he knew he could get away with anything so the posts became more inflammatory. In the end I ignored the posts. I am happy to see the rules being consistently and fairly applied to everyone.

    Thank you to all the moderators, this subject must have been discussed many times and I am glad that everyone of the moderators came to the same reasonable decision. I understand moderating is a difficult job but applying fair, consistent rules to everyone, will make this site so much better.

    Having said this I have learnt so much from good, experienced, empathetic people here, have been helped by moderators , they probably do not realise how much they have helped me sometimes, and really like this site. That is why I didn't want to leave the site because of one person. I have also lost some friends specifically because of this perception but have also made some friends which is so important if pain is part of your daily life. So thank you everyone here for your kindness. I reached this site at a really low point which I think many people do and really appreciate a site where other people just get it.
  • nor are his posts, the only issue. There is also the issue of older members sending private messages to new members about Jon, and following his posts waiting to see what he has to say, and if it is the least bit taken out of context, they immediately pm the new member, filling them in on how Jon is mean, a bully, and before we know it, new members who might not have taken offense to what he said or better yet ignored it, now suddenly are offended, and the older members have to jump in to 'defend' said new poster...and it starts all over again.
    We , as moderators have told all of the members of Spine Health, over and over again, if there is a post that offends you, let us know. Don't contribute to the problem by continuing to add to it.......don't take it upon yourself to 'warn' new members. It is not necessary and constitutes just as much bullying behavior as you complain about him doing.
  • LizLiz Posts: 7,832
    Jon has been here a long time, and seen many moderators come and go because of other commitments, but none have left because of Jon breaking rules and trying to manipulating them.
    I don't like the insinuation that we do not follow the forum rules when moderating and allow Jon to manipulate. If Jon breaks a rule his post will be edited.

    When I first joined spine-health I replied to a few posts with things that worked for me, e.g. how I coped using a wheelchair and another of using a cane at the age of 40, and met with negative comments making out I talk rubbish, and that using these at a young age was embarrassing and they couldn't cope and were not prepared to take notice, did I react, no I let it go (and no it wasn't Jon) did I think rules were broken no I didn't, it was their opinion and although they asked for advice they didn't want my answer. I found it easy to ignore posts of those I know would not like for whatever reason.

    I have edited a post which was a blatant violation of the forum rules, and was met with an argument from more than one member who thought the OWNERS rules are wrong and it should be allowed,
    We have had a member think that spammers posts should be left to members so they can decide if they want to click on it or not.

    I agree totally with Sandi about the negative pm's being sent to new members.

    Looks like we never will please everyone

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • which break the forum rules and guidelines, regardless of whom they may or may not belong to. I don't let those who send me pm's get away with any more or less than I would someone brand new to this site.
    Liz, Ron, Jelly, Tam, and myself do the very best that we can to be fair, to treat each one of you with the respect and care that we can provide.
    I have been here almost non stop for the last 38 plus hours, by myself apparently trying to deal with this, before it became another one of those bashing threads, despite the request that Ron made in the very first post not to let that happen, yet within a short time, it went south.
    No, it appears we will never make everyone happy and it also appears that despite the public claims of innocence and wanting peace, there are hidden agendas and behind the scenes behavior that contributes to this issue occuring again and again.
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