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September 9th surgery

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  • Hi Melissa,

    I am just catching up on your thread and I'm really glad you've decided to stay. So many of us care about you, and read your posts regularly no matter if they are negative or positive. Your thread is one of the longest that is one person's (and John's, too). We care, we are always here to listen. Even if we don't know what to say to help you, we are here, and we will look forward to sharing the forum with you.

    Take good care,
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

    Comment


    • Yeah!! You're back. I agree with all of the above. Like Sally I keep thinking I don't have time to do this anymore and try to wean myself away. However, I end up doing at least a quick check most days to see how folks are faring. I sent you a PM too, Melissa. Janet
      Janet

      61 years old--57 for surgery

      Diagnosed in 1965 at age of 13--no brace
      Thoracic Curve: 96 degrees to 35 degrees
      Lumbar Curve: 63 degrees to 5 degrees
      Surgery with Dr. Lenke in St. Louis--March 30, 2009
      T-2 to Pelvis, and hopefully all posterior procedure.

      All was posterior along with 2 cages and 6 osteotomies.

      Comment


      • "The mind is VERY powerful, and robbing us of hope only feeds discouragement." That is so true. I thought that what this doctor said was very strange for a pain doctor who must understand that the mind plays a part in pain. When we're down, pain is always worse, or so it seems. I agree with Rohr. I am disappointed you saw this doctor who very clearly just made you feel worse when he already knew you were at the end of your tether.

        As Rohr says, you have multiple things going on, each causing pain. All you can do is get each one fixed/treated/eased, one at a time, until you get your life back. Which is what you're doing. It's just taking time. It's hard to be patient when you're in pain, and pain robs you of hope as well, but I hope we can keep encouraging you to hang in there because there are better days ahead Melissa.

        Do you like to read? Perhaps someone could recommend a good book, one which just swept them away while they were reading it. That's something you can do when you take your medication, lie down with a good book and let the meds do their thing, while you're immersed in a ripper story!
        Surgery March 3, 2009 at almost 58, now 63.
        Dr. Askin, Brisbane, Australia
        T4-Pelvis, Posterior only
        Osteotomies and Laminectomies
        Was 68 degrees, now 22 and pain free

        Comment


        • Thank you all for welcoming me back. I so wish that there was so way we could all get together. Thank you all. Besides my pain situation, this is the most terrible time of year for me . February 27 is the date that my Mom died 10 years ago and February 28 is the date that my Dad died 6 years ago. I know that I have to let go of the situation with my daughter who is choosing an lifestyle that is not what she was brought up with. My husband is being very nice, very helpful to me. He went with me to the pain management Doctor. I am glad that he did because I think he finally got what I am living with. I am so looking forward to moving to my new home. The closing is scheduled to be March 8th and we should be moving in by the end of the month. I will get my things that have been packed since last June. I am getting a new bed that moves up and down and it massages me as well. Last weekend, we went furniture shopping and I found a very comfortable chair that I can put in my family room . So I will have a very comfortable chair in my bedroom, the living room and now the family room.I am going to a pain support group here in The High Desert. I am not going to let that doctor keep me down. I was very surprised with his attitude . I have met many Doctors at the University of CA Irvine and not one was so down right nasty and so down about me getting any better.Thank you again for helping me with my life.
          Melissa

          Fused from C2 - sacrum 7/2011

          April 21, 2020- another broken rod surgery

          Comment


          • Originally posted by JenniferG View Post
            "The mind is VERY powerful, and robbing us of hope only feeds discouragement." That is so true. I thought that what this doctor said was very strange for a pain doctor who must understand that the mind plays a part in pain. When we're down, pain is always worse, or so it seems. I agree with Rohr. I am disappointed you saw this doctor who very clearly just made you feel worse when he already knew you were at the end of your tether.

            As Rohr says, you have multiple things going on, each causing pain. All you can do is get each one fixed/treated/eased, one at a time, until you get your life back. Which is what you're doing. It's just taking time. It's hard to be patient when you're in pain, and pain robs you of hope as well, but I hope we can keep encouraging you to hang in there because there are better days ahead Melissa.

            Do you like to read? Perhaps someone could recommend a good book, one which just swept them away while they were reading it. That's something you can do when you take your medication, lie down with a good book and let the meds do their thing, while you're immersed in a ripper story!
            I used to love to read. I was always having my head in a book. However, for some reason since my November 7th surgery, I have not been interested in reading at all. Yesterday , I did order some books from my library.
            Melissa

            Fused from C2 - sacrum 7/2011

            April 21, 2020- another broken rod surgery

            Comment


            • hey Melissa
              i am so sorry the doctor was a jerk, besides not offering much help....
              can you find another pain doc so you don't have to see this one again....???

              i was an avid reader...always....
              but when my father died, i could not concentrate to read for a year...
              depression is one cause of this, though maybe it is not the cause
              with you...

              i hope answers come...and i hope the support group helps
              with the frustration, disappointment and pain...

              jess

              Comment


              • Melissa,
                I suspect that the tone of your thread has now become pain management. That's really neat if you think about it. Not all of us are able to get away to meet with a pain group, and maybe some of us are just too shy to do so. Pain is a very relevant topic in the scoliosis world. Many of us also suffer other ailments, such as fibromyalgia. I did read somewhere that fibromyalgia is more common among people with scoliosis. Please don't ask me to cite my source because I can't. I know, for me personally, the only pain group that meets in my area is over 35 miles away. I find my place to talk right here amongst "strangers" who are going through similar things as I am, while retaining some sense of anonymity. It might be odd, but I like it that way. I also find myself complaining less to my friends and family here around me. Believe me, you are an inspiration to many, many people. Also, think of all the people that read but don't post. They benefit without feeling like they need to contribute. That's okay, too. But we do draw some of them out of the woodwork, which is really special when you know you've helped someone open up about something that they don't feel they can talk about to people they personally know.

                As far as the new bed goes, that's GREAT! I bought an older version Craftmatic Adjustable Bed with built in massage. It just vibrates at two different settings, no big deal. But I like it on low. The high setting actually makes my pain worse, so you'll have to mess around with yours to see what works for you. I also bought a memory foam mattress for it and topped it with an egg crate and a heated mattress cover. This is MY place to come when I don't feel well. I know you're just going to love it. You can set your head and feet to wherever is comfortable to you.

                Thank you for staying. (((hugs)))

                Rohrer01
                Be happy!
                We don't know what tomorrow brings,
                but we are alive today!

                Comment


                • All of you who have responded to me whether thru the forum, PM or via Email have made me feel so good. I will continue to come here and let everyone know about my life.
                  Melissa

                  Fused from C2 - sacrum 7/2011

                  April 21, 2020- another broken rod surgery

                  Comment


                  • Melissa

                    You are right, we should all get together. I know you wanted to come to UCSF for the meeting and couldn’t but maybe next year you could plan on it. This goes for everyone else, please try to plan for the next one coming up. Besides, San Francisco is a lot of fun, and its impossible to be bored there and the food is outstanding. (smiley face)

                    I go down each year and Linda and I wonder where all you guys are at?

                    All the surgeons and staff at UCSF are the greatest people....they are ”extremely” considerate.....

                    Linda, also in this group, deserves high marks. Thank you for caring so much.

                    Ed
                    49 yr old male, now 63, the new 64...
                    Pre surgery curves T70,L70
                    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                    Dr Brett Menmuir St Marys Hospital Reno,Nevada

                    Bending and twisting pics after full fusion
                    http://www.scoliosis.org/forum/showt...on.&highlight=

                    My x-rays
                    http://www.scoliosis.org/forum/attac...2&d=1228779214

                    http://www.scoliosis.org/forum/attac...3&d=1228779258

                    Comment


                    • Thanks Ed.
                      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


                      • Melissa,

                        I will also chime in here that I try to follow what's going on with you and always am hoping you will do better soon! There are lots of valuable comments before mine, so I won't rehash. But I will just add that it hasn't been that long (not even a year) since you've had some pretty major surgeries. So, your pain could also simply lessen with more time for healing. Glad you are here!

                        ,
                        Evelyn
                        age 48
                        80* thoracolumbar; 40* thoracic
                        Reduced to ~16* thoracolumbar; ~0* thoracic
                        Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
                        Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
                        Not "confused" anymore, but don't know how to change my username.

                        Comment


                        • Originally posted by titaniumed View Post
                          Melissa

                          You are right, we should all get together. I know you wanted to come to UCSF for the meeting and couldn’t but maybe next year you could plan on it. This goes for everyone else, please try to plan for the next one coming up. Besides, San Francisco is a lot of fun, and its impossible to be bored there and the food is outstanding. (smiley face)

                          I go down each year and Linda and I wonder where all you guys are at?

                          All the surgeons and staff at UCSF are the greatest people....they are ”extremely” considerate.....

                          Linda, also in this group, deserves high marks. Thank you for caring so much.

                          Ed
                          Ed, Do you know the date?

                          Melissa
                          Melissa

                          Fused from C2 - sacrum 7/2011

                          April 21, 2020- another broken rod surgery

                          Comment


                          • greetings from the snowy/sleety east coast....
                            that is where some of us are, Ed...
                            i cancelled my last CA trip last year due to pain...
                            i wish i had gone....
                            but it was 11 hours with stop overs....
                            some smaller airports on east coast have no direct flights...
                            one either travels to NYC to JFK, or has to have connecting flights...
                            makes for a looooong trip...

                            jess

                            Comment


                            • Originally posted by jrnyc View Post
                              greetings from the snowy/sleety east coast....
                              that is where some of us are, Ed...
                              i cancelled my last CA trip last year due to pain...
                              i wish i had gone....
                              but it was 11 hours with stop overs....
                              some smaller airports on east coast have no direct flights...
                              one either travels to NYC to JFK, or has to have connecting flights...
                              makes for a looooong trip...

                              jess
                              I know Jess. My daughter wants me to go to NC this summer but I just do not know how I could do it. I think that I will be staying here and working on getting stronger. I did also want to go NY ,LI to my 30th high school reunion as well but I will have to see. Right now I am looking for another pain doctor whose views are in line with mine. It is a sunny warm day here in CA and for that I am thankful as my back hurts more in the cold.
                              Melissa

                              Fused from C2 - sacrum 7/2011

                              April 21, 2020- another broken rod surgery

                              Comment


                              • i hope that you find a good pain doctor...one that you can have a rapport with...
                                i know what you mean about the cold...and i can feel precipitation coming before it arrives....
                                barometric changes have an impact on those in pain...

                                glad you have a sunny day to enjoy...
                                jess

                                Comment

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