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  • Someone needs help posting in this forum

    Hello Gardenia! You don't know me although from reading all of the posts on the scoliosis forum I feel like I know you! Anyway, my name is Jen and I'm from RI. I am 38 with severe AIS that wasn't treated and now my surgery is in less than 8 weeks!! This is going to sound strange but I have registered 3 times, emailed support from the website @ NSF and nobody has responded! It's beyond frustrating because I am so anxious and feel so alone and I'm not able to post on the forum. I can read the posts but that's it and that makes me feel Like I'm eavesdropping since none if you know about me...I'm very sorry to bother you as I know your surgery is coming up also but I'm so frustrated and reading your post today about UH, I noticed your email.

    Can I bother you to maybe ask Linda Racine what I should do?

    I would love to be able to post and talk to all of you as you all seem so incredible and I have nobody who understands what I'm going through. If you are too busy, I totally understand. Thank you for reading and best of luck this month...you will be in my prayers!

    Jennifer Gomes
    Jen Gomes <jengomes04@yahoo.com>
    Gardenia
    Baja California, Mexico & El Centro, Ca
    pre-surgery 75° and 89° - post ?
    Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
    T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

  • #2
    Hello Jennifer,

    I am pretty new to the forum, and I also had trouble posting at first. I had sent the first email to jpobrien@scoliosis.org then answered and solved by Lori Picano.

    I'm not sure where on the site I got that email, but that's how it got it solved.

    I do keep running into another glitch, probably because I'm long-winded. Somehow, my log-in times out when I'm not looking, and I lose things I post. Suggestion: back up your message to Word (or similar) before you post, so things don't get lost.

    I hope all will go well for you, Aunt M.

    Comment


    • #3
      Jennifer, don't think you are "eavesdropping." I have found the forum members to be very helpful and supportive, even though my scoliosis is minor and secondary to other spine issues.

      Comment


      • #4
        Jen,
        Welcome to the forum. I hope you can get some help in being able to post start your own threads. We would all like to get to know you and give you support in any way we can. I know others have had the same issue.
        Karen

        Surgery-Jan. 5, 2011-Dr. Lenke
        Fusion T-4-sacrum-2 cages/5 osteotomies
        70 degree thoracolumbar corrected to 25
        Rib Hump-GONE!
        Age-60 at the time of surgery
        Now 66
        Avid Golfer & Tap Dancer
        Retired Kdgn. Teacher

        See photobucket link for:
        Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
        Before and After Picture of back 1/7/11
        tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
        http://s1119.photobucket.com/albums/k630/pottoff2/

        Comment


        • #5
          Hi...

          Unfortunately, I don't have the ability to help with registration. However, in the past, I think that the usual problem is that the person registering does not get the confirmation email, probably because it goes into the spam folder. You might tell Jen to try looking there. Also, there's no indication how long Jen has been trying. I don't know often new subscribers are approved, but it generally takes some time. Anyway, if neither of those things are the case, please message Joe O'Brien (that's his User ID), who can hopefully help.

          --Linda
          Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
          ---------------------------------------------------------------------------------------------------------------------------------------------------
          Surgery 2/10/93 A/P fusion T4-L3
          Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

          Comment


          • #6
            HI Jen,
            It took me a little over 3 years to be able to post or reply. So everyone thinks I am still new even though I have been reading this for over 4 years now. I did not stay at trying,but it did come through this summer. If I still have the person's name that helped me I will get it to you.It is in my redular email.
            T10-pelvis fusion 12/08
            C5,6,7 fusion 9/10
            T2--T10 fusion 2/11
            C 4-5 fusion 11/14
            Right scapulectomy 6/15
            Right pectoralis major muscle transfer to scapula
            To replace the action of Serratus Anterior muscle 3/16
            Broken neck 9/28/2018
            Emergency surgery posterior fusion C4- T3
            Repeated 11/2018 because rods pulled apart added T2 fusion
            Removal of partial right thoracic hardware 1/2020
            Removal and replacement of C4-T10 hardware with C7 and T 1
            Osteotomy

            Comment


            • #7
              Hi Jen, i also had trouble and started to think that theNSF wasn't real. The way I was able to get on, was to start the process, but I never received the confirmation email. Then I went to the support group tab and sent a message there. The executive assistant of NSF got back to me and she helped get get into the forum. At this writing, I cannot remember her name, but she was very helpful.

              Best of luck.

              Comment


              • #8
                Confirmation

                That's might be the clue! because I registered and immediately got to write. However, I used to get automatic emails of sorts but that ceased a while ago. No notification is ever sent to me. It is hard to know when someone responds to your forum unless you read thru the threads.

                Also, the original threads Headers can be old and not apply to a current problem. I got a suggestion to start a new threat.

                Good luck Jen, if you are reading.

                I only have less than 2 before I fly to ST Louis!!!!
                Gardenia
                Baja California, Mexico & El Centro, Ca
                pre-surgery 75° and 89° - post ?
                Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
                T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

                Comment


                • #9
                  finally!!!!

                  hello everyone! Gardenia, thank you so much and everyone else for your help! Lori fixed whatever the problem was. anyway, my name is Jen and I'm 38 from R.I.. I was diagnosed with AIS @ 10 yrs old and it was never treated. I now have a severe thoracolumbar curve to the left with major side shift and my rib cage on the right is collapsed on my pelvis and pretty bad cosmetic deformity which has weighed heavily on my self esteem. my pain is intolerable and i now have sciatica because of the curve. My surgery is in 8 weeks and i am freaking out....crying constantly, having panic attacks, self medicating so i can work my 70 hrs every week until surgery ( i am a single mom putting my daughter thru catholic school) so im trying to get finances straight before surgery. i have been reading about all of you for a while now and can not tell you how much you have all helped me before i could even communicate with you all. you are all so strong and brave and compassionate that i never start my day without checking the forum. i have prayed for each of you who have had surgery while i have been reading and praying for those of you who are in pain. you have all become a huge part of my life already and i am so thankful for that. i dont have anyone to talk to who truly understands what we go through and now im sitting here crying while im typing because i can finally be a real part of what you all have...if you will have me, of course! well, im blabbing so i will stop for now but again, thank you for the help! looking forward to getting to know each of you!!
                  38 yo with 71* left thoracolumbar curve from untreated AIS dx'd @ age 10. Surgery on for Jan 3, 2013 with Dr.'s Robertson and http://i30.photobucket.com/albums/c3...ps321159d8.jpg. Spinal Fusion with instrumentation from T2-L4.

                  Comment

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