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Expectations - What are they?

dilaurodilauro ConnecticutPosts: 9,859
edited 06/11/2012 - 8:44 AM in Spine-Health Announcements
I know that when I sign up for any online forum group, I do it to hopefully get answers to so of my questions or to learn more about what I am after.

When you first registered for Spine-Health, what did you want to see? What was your expectations, what were you thoughts?

I initially registered at Spine-Health responding to a survey question that Spine-Health's CEO presented (Stephanie)

Prior to that, I had been using Spine-Health site as a resource into getting information regarding my thoracic problems. I never thought about the online forums

But after registering and reading posts, I saw what this site was all about. I slowly started to post and respond to other threads. I knew that based on my own situation, I could respond to most questions.

From there, I got to meet so many great people. I used to park myself in CHAT every night to get to know people better.

From there, my involvement grew. I was fortunate enough to actually visit the Spine-Health office in Chicago when I was on a mini-vacation. From that point on, Spine-Health became part of my daily activities.

My expectations were greatly exceeded. I was only looking for information to start with, but I gained so many 'spiney' friends, learned so much from others and for me to provide some insight to spinal problems was a plus.

Everyone joins an online forum for a reason.

What were yours?

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


  • I found spine health in a google search and boy am I glad I did. It is so nice to be able to come here and have access to so much information. You get answers to questions you learn new things.

    Again I feel lucky to have found this website!!
  • When I signed up I was frustrated by my doctors lack of diagnosis. I had rotator cuff surgery and it didn't help. I had just had MRIs (3 in a row) and the info on them was confusing.

    When I started reading I was looking for some clue that would tell me where to go for help. What I found was a huge wealth of information. And then I found a support group.

    While I try to keep control of how much time I spend here each day this site and the people here are an invaluable part of every day.
  • I joined for the information and social support afforded by the chat room. My expections were greatly exceeded. The chat room helped my depression and loneliness the most. I have made some incredible friends in chat, most of whom continue to be there for me.

    Best wishes to all,


  • Like Rwill, initially I found Spine Health when I did a google search on back problems (Spondylolisthesis, I think).

    I found a wealth of information, which really helped me to understand my condition.

    Then, as it looked like I might need surgery (and I was terrified at the thought :jawdrop: ) I started to read the threads. Then one day I got the courage to actually post myself. I found the amazingly friendly and helpful 'spineys' were a great support. (Thank you to all of you :D)

    Gradually, I came to terms with the fact that I had to face surgery. Hearing everyone's surgery stories (even the horrid ones) helped me to have an idea of what I was facing. I went into surgery prepared for the worst, but hoping for the best. I did have some problems/complications, but they didn't phase me because I knew they were possible.

    I needed a transfusion after surgery,reacted to the morphine, had an allergic reaction to the dressings, my incision wasn't closed properly, developed an infection, produced over granulation tissue, needed cauterising with silver nitrate and I even had a TIA (mini stroke) scare (given the all clear). Despite all of this, I am very happy with the outcome of surgery!! :D

    The support I have received from some very caring people, who know what I am going through and don't get fed up hearing about it, has been invaluable to me, :-) both in the time leading up to my surgery, and in the recovery period. I come here every day (I am not back to work yet), and now I hope to support others through this process.

    I have made some very good friends, who I suspect I will keep in touch with once I am back to my job and life. I certainly recommend this site to anyone I know who has any sort of trouble with their back.

    I would say that Spine Health has been an enormous help to me in this journey, along with prayers from my friends. :D
    Thank you to you all >:D<
  • I dont' remember how I found this site exactly, but it was right after my PCP told me I had severe neck problems, needed surgery (after trying PT) and told me to find a spine surgeon. I came to research cervical issues and joined the forums after reading them for a while and realizing how many people were in the same boat I was in and how caring, knowledgeable and supportive they all were. I didn't know if I'd fit in or if I'd stay, but I had to try because I needed something to help me. I'm now almost to my 3000th post. (Geez, I looked back at my old posts and I'm amazed at how many smileys I used. I guess I loved them back then.)

    I was again referred to this site when my surgeon told me I needed a 3-lvl ACDF, he gave me a SH paper off a notepad and checkmarked what I'd be having done. He told me to come to this site and research what I needed and get back to him in a day or two with my decision whether to have the surgery or not.

    I started posting and replying more and more and making friends, friends who understood what I was going through. It was a blessing to my hubby also because he didn't understand anything other than my neck was severely damaged and I needed surgery. This was all so new and shocking and the SH forums provided a nice warm blanket just when I needed it most.

    This site, like most others have said, exceded my expectations. I thought I'd only find articles and videos with regards to my problems, but found friends, answers, support and was able to give it back as well.

    Interestingly, when I was talking with my surgeon about my lumbar problems and he told me I needed surgery, when he started to get out the SH notepad, I said "Do I need a TLIF?" and he said yes, then just looked at me and put the pad down. I told him that I'd been a member of the SH forums since before he did my ACDF and that I was now an authority member. He had a big smile on his face and asked me all about it. That was cool.

    I can't imagine not having this place to come to. I've often joked with PapaRon that I'm going to make my own Spine-Health business cards to keep handy when I meet someone that needs it.

    I was walking my dog one day and this young lady, probably about 24 years old, comes walking down the path, very slowly and hunched over. We crossed paths and she just loved Wally and he jumped up to meet her and she said "Oh, little fella, I'd bend down to pet you if I could." I asked her if she had spine problems. Turned out her name was Chrissy and she'd already had three back surgeries in her young life. We shared stories about our spines and I talked to her about Spine-Health, but I doubt she remembered. That's when I wished I'd had something in my pocket to give to her because she could find so much here to help her, if only the friendship and support of the forum members.

    I believe we truly need each other and I know that what's offered here, all of it from the articles to the forums, is more important to spineys than many other things in their life. At least it is for me.

  • Ron,
    In setting goals it is realistic to think we could and should be able to carry on as normal and some of the time we inadvertently set unattainable objectives that with hindsight and experience we learn are set too high for our current capability, the important thing is to reset what is possible and aim for that sort term attainable goal, they give us the confidence that we can achieve these and the experience to develop that technique toward other area and lateral improvements.

    Trying to do the impossible soon creates resentment and disappointment in ourselves that we cannot do the things that we expect to be able to do and for the most part we live between that duality of expectation and our reality. As our tolerance and experience of pain are unique it is only us, that knowing when to push and when to rest is always difficulty, left unsupported we can fluctuate between manic activity and immobility, in pacing we learn to set our own level of daily capacity and the frustration that what was achievable one day is not the next. The biggest factor in stopping activity is setting off too fast and then we associate more activity with increased pain and have learned that activity itself relates to pain when it is the excess that is the problem.

    Although we may need to develop those skills of resilience we have to be honest with ourselves and acknowledge when things are not possible and it is counter productive in trying beyond that reasonable threshold of pain, that differs for each and every one of us and only we know as individuals where that potential and evasive stopping point is, increased pain can sometime come when we have inadvertently exceeded our own limits and it does not take many of these episodes to learn we should have stopped sooner.

    That is the key to be mandated to exist in that spectrum between expectation and reality, it is never a static or quantifiable level, we perhaps always feel we have not done sufficient or more than we needed, trying is important and we should not let our misconception of what might happen determine how we proceed, those understandable notions that we could be doing more damage never become reality and can limits what we expect of ourselves.

    If the benefit of pushing contributes disproportionately to increased pain then our effort have been in vain, if on the other hand we move forward however small on the basis that we tried a little bit harder then that addition effort has been productive and we may have learned a new threshold, as time passes we develop more effective and appropriate strategies of coping and improving than we initially thought we would and on reflective have progressed. The adage that it is one step forward and some back is real and even when we have some failure or disappointment we should remember that we are trying.

    In enduring chronic pain every day we already have excessive capacity to do more with the right help, encouragement and support, a definitive plan is never achievable or appropriate and that continual of self-development never stops this evolving process. In trying to be positive we fill the space where doubts can originate, in acknowledging what we can do and getting others support we are encouraged to continue, that may well be mind over matter and is preferable to an existence of not trying on the basis of what might happen or restrict apprehension.

    Many here are achieving fantastic objectives despite and because of the pain they endure and we can all support that success. Through my own effort and addition support I have and will continue to manage, I have improved my skills and knowledge. My own strategy is more defined in what and how I achieve things, SH helps us all develop the right improvements and examples of what can be overcome and the future ahead.

    Take care John
  • I started reading posts long before I joined myself. I had spinal cord injuries both lumbar and cervical and ended up so far with a surgery c5-6,c-6-7. Many things have happened and my condition has deteriorated. Surgery did not go well, my right vocal cord was paralysed. Could no longer work! I could go on forever. But what really caused me to finally take the step to become a newbie was facing the fact that I was depressed by my medical condition. I needed help and I needed understanding from people who knew exactly what I was going through. Most people don't know what to say to those of us who are disabled but when I come on here I know you all understand and the bottom line is we all need support. We need to be able to open up and talk about our issues with those who understand and truly care. That is what I have found here for the most part. I still have a hard time opening up but at least I know I have a place to go if I need to share. I also realized I am not alone in all this and there are so many worse off than myself. I for one try to shield my family from many of my feelings as I know alot of you do also. Here I can let those feelings out. I am honestly grateful I found this site. Emotionally it has made me a stronger person.
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