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  • #31
    Definitely Consensus Genetic

    Jess,
    I believe most surgeons would say it's genetic. Actually my daughter, who also has scoliosis, and I participated in the research that led to Scoliscore and I know that Lonner works with Scoliscore. We swabbed our cheeks and my husband was included in the sample. Then they came back and asked my daughter and I to spit in a cup to get a better DNA sample, but didn't ask my husband. In my own family, my sister also has scoliosis,
    and when I spoke to some of my cousins recently I discovered that each one either had scoliosis or one of their kids did. And my parents are no longer alive and were never diagnosed with scoliosis, but I bet they both had it as they both had
    horrendous backs. Also, a doctor I saw last year told me that scoliosis is particularly high in certain populations--Jews and Amish. Obviously, this is not exclusive--anyone can get scoliosis.
    Lisa
    60 degree thorocolumbar curve beginning at T12
    58 years old

    Comment


    • #32
      Originally posted by lisazena View Post
      Jess,
      I believe most surgeons would say it's genetic. Actually my daughter, who also has scoliosis, and I participated in the research that led to Scoliscore and I know that Lonner works with Scoliscore. We swabbed our cheeks and my husband was included in the sample. Then they came back and asked my daughter and I to spit in a cup to get a better DNA sample, but didn't ask my husband. In my own family, my sister also has scoliosis,
      and when I spoke to some of my cousins recently I discovered that each one either had scoliosis or one of their kids did. And my parents are no longer alive and were never diagnosed with scoliosis, but I bet they both had it as they both had
      horrendous backs. Also, a doctor I saw last year told me that scoliosis is particularly high in certain populations--Jews and Amish. Obviously, this is not exclusive--anyone can get scoliosis.
      Lisa
      I totally agree. All 3 of my kids (who all have mild scoli) participated in that research study. My youngest actually had the scoliscore test a year or so ago, and I spoke with the Dr. who headed the study to get her results. He told me that everyone who has scoliosis has common ancestors. I found that rather interesting. Thank goodness for us, my daughter's score was very low, but we were advised to continue to having her followed until she's grown. Because although their research shows very low scores have practically no risk of progressing to the point of needing surgery, anyone could be the first case.
      __________________________________________
      Debbe - 50 yrs old

      Milwalkee Brace 1976 - 79
      Told by Dr. my curve would never progress

      Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
      Pre-Surgury Thorasic: 66 degrees
      Pre-Surgery Lumbar: 66 degrees

      Post-Surgery Thorasic: 34 degrees
      Post-Surgery Lumbar: 22 degrees

      Comment


      • #33
        I find all of the scolicore stuff fascinating. I mean, it could eventually explain why some of us never progress beyond a certain point, an why some of us end up needing surgery.

        Also, I think they should stop calling it idiopathic scoliosis now. The name hasn't been changed to reflect the change in the scientific knowledge. Even if we can't point to someone in our family that we know had it, doesn't mean it wasn't somewhere back in our family tree. I think that even though they still don't know a lot of the whys or hows of scoliosis (that is neither congenital or related to a neuromuscular disease), they at least know there are genes linked to the cause.

        It is such a strange disease. I wish we could all participate in these studies, I want them to figure more things out...like why someone can go for 20-30 years without progressing, and then BAM progressing 10 degrees in one year. So interesting and frustrating!

        Anyway, thanks to you two ladies who were willing to participate in that study...hopefully if God ever blesses me with biological children, especially a girl, they will benefit from your help. Also, 3 of my 4 siblings have biological children already, and they are on the alert for signs of scoliosis, so that if they ever see it coming they can get that test.
        Rebecca
        Age: 28
        Dx w/ scoli @ age 12 S curves T-40* L-42*
        wore night bending brace as teenager
        Curves changed to 50's plus or minus
        herniated disc L2-3, Discectomy October 2007
        fusion L2-3 November 2008
        Revision L2-3 Fusion, Removal of hardware August 2009
        Curves measuring 52 T&L September 2010
        Fused T4-L4, all posterior December 27th 2010
        gained almost two inches in height

        Before and After Exterior
        Before and After X-rays
        My blog: http://herscoliosisjourney.blogspot.com/

        Comment


        • #34
          Originally posted by peachrush7 View Post
          Also, I think they should stop calling it idiopathic scoliosis now. The name hasn't been changed to reflect the change in the scientific knowledge. Even if we can't point to someone in our family that we know had it, doesn't mean it wasn't somewhere back in our family tree. I think that even though they still don't know a lot of the whys or hows of scoliosis (that is neither congenital or related to a neuromuscular disease), they at least know there are genes linked to the cause.
          I think its still idiopathic because, it is multifactorial. They know you need to have the gene, but they don't know what triggers it. I'm pretty sure you can be a carrier of the gene, and never develop scoliosis.
          1993, Age 13, 53* Right T Curve w/ Left L compensatory
          2010, Age 30, 63* or 68* (depending on the doc) Right T Curve w/ Left L compensatory

          http://livingtwisted.wordpress.com/

          Comment


          • #35
            Originally posted by peachrush7 View Post
            Just to throw my 2 cents in, surgery is not a fix. It helps us prevent further damage to our bodies, and hopefully provide a better life in our future. However, we will always have scoliosis, and because we have it, it will always be a part of our lives. We are either post-op or pre-op (or maybe never-op)...but we will always need to stay on top of what is going on with our spine. It's hard to accept, and it's frustrating to deal with a disease that is not very well understood, or explained to those who live with it. Most of us will at some point have at least one surgery in our lives related to our scoliosis. It's just the reality of scoliosis. I don't think it should overwhelm your thoughts or mind...it's just something to be aware of and deal with when your back is in a place where it needs to be looked after a little more aggressively.
            Love this post! It's a great way to look at it.
            1993, Age 13, 53* Right T Curve w/ Left L compensatory
            2010, Age 30, 63* or 68* (depending on the doc) Right T Curve w/ Left L compensatory

            http://livingtwisted.wordpress.com/

            Comment


            • #36
              hey...i certainly stand corrected....
              but i think you are right, Rebecca...
              they should stop using the term idiopathic...it is very misleading....
              and no one in my family has or had scoli...
              at least, not recent generations....
              i had it in my teens but it wasn't really diagnosed til i was 31....
              i do not believe i was born with it....
              ballet didn't help, i am pretty sure, nor did carrying heavy books on one hip...


              that thing mehera said about carrying the gene but not having scoli is interesting to me....

              jess
              Last edited by jrnyc; 08-31-2011, 05:10 PM.

              Comment


              • #37
                Disc space

                I am fused T-4 to sacrum. I only saw one cage down by my sacrum. The discs are removed, the ends of the vertebra are roughened so that the vertebra for fusion is nourished by the live vertebral bone thus. causing the vertebrae to fuse in time. Hardware is used to support the spine during the healing process and permanently thereafter. My first fusion as a child, an old fashioned technique, weakened over time because there was no hardware to maintain it. Those days the discs were left in place and when they shrunk and deteriorated over time I list the correction. Without hardware a person stayed bedridden, immobilized in plaster for one year. That happened to me at age 14.
                Also, hardware enabled superior correction to that of my hinged, pre-op plaster cast.
                Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
                Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

                Comment


                • #38
                  i do not know if it is because i have degenerative disc disease, but Dr L. said i would need
                  several cages put in....if/when i have surgery...

                  jess

                  Comment


                  • #39
                    Jess

                    You know I had a bad case of DDD. And you know this also contributes to vertebral disease. Smorls Nodes and degenerative issues that only continue to get worse over time. It might not bad idea to ask Dr L about this and corpectomy and or partial corpectomy in your case. After Dr M did the decompression, and clearing of all that diseased bone, it cleared and relieved all the impingement nerve problems and now I have no pain at all. 5 cages or spacers, through my lumbar spine was what the doctor ordered, and wow! what a difference. I never thought that all my lower end would be fixed completely, it also dealt with all the sciatica and leg pain. Problem solved!

                    It was like water on a fire, and my fire is completely out.

                    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


                    • #40
                      i am so glad you are free of that awful disc pain...it is the worst!
                      i wish the surgeons could fix my discs without having to put rods in...

                      jess

                      Comment


                      • #41
                        Jess,
                        I know you have researched this surgery as well as anyone and have also seen the best surgeons. I know it's not my business, but I worry about you waiting too long to take the plunge. The idea of having rods and screws in my back was not a pleasant thought during my presurgery days, but now I just think of it as my "support" for my spine. Fusion to the sacrum isn't as bad as one would think. I imagine you have seen Ed's skiing videos and Jenee's pictures of climbing a temple at 6 months post op. Obviously, it's a major decision to have surgery and there are no guarantees.
                        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


                        • #42
                          Originally posted by golfnut View Post
                          Jess,
                          I know you have researched this surgery as well as anyone and have also seen the best surgeons. I know it's not my business, but I worry about you waiting too long to take the plunge. The idea of having rods and screws in my back was not a pleasant thought during my presurgery days, but now I just think of it as my "support" for my spine. Fusion to the sacrum isn't as bad as one would think. I imagine you have seen Ed's skiing videos and Jenee's pictures of climbing a temple at 6 months post op. Obviously, it's a major decision to have surgery and there are no guarantees.
                          I have to agree with Karen.

                          Jess--honestly, I don't usually know that my (quite long) rods are even there! I know that sounds nuts--how could I not? But I don't feel a thing. I know that not everyone is as lucky as I am, but that's my experience.
                          __________________________________________
                          Debbe - 50 yrs old

                          Milwalkee Brace 1976 - 79
                          Told by Dr. my curve would never progress

                          Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
                          Pre-Surgury Thorasic: 66 degrees
                          Pre-Surgery Lumbar: 66 degrees

                          Post-Surgery Thorasic: 34 degrees
                          Post-Surgery Lumbar: 22 degrees

                          Comment


                          • #43
                            thank you debbei and karen, for your warm concern...

                            what scares me most, and keeps me at the pain management doctors instead of at the
                            surgeon's office, is the stories of those who didn't do well...the ones who had good
                            surgeons, SRS surgeons, who followed orders yet still are in some awful kind of scoli hell
                            afterwards...i do not mean right afterwards, either....it is years afterwards i fear....
                            (and i know there are no guarantees)...
                            i also know my knees are bad now, so bending from the knees worries me, too....
                            my osteopenia worries me...but regardless of all that, if i only needed surgery to L2 or 3, i swear to you i would have had it a few years ago, when i first started seeing Dr
                            Lonner....
                            it is the fusion to sacrum/pelvic fixation that freaks me out, no matter how much i try to
                            tell myself i will be OK...it isn't pain i am afraid of, as i live with degenerative disc
                            disease...those who have bad discs know what type of hell that can be....
                            what scares me is being one of the "unlucky" ones, without apparent reason, and
                            regretting rods in my spine that will fuse my bones forever...
                            right now i do not know if we are talking T4 or T11 to sacrum...

                            it is a decision only i can make...i know my age is against me in terms of how long i
                            can delay a decision....
                            there are also personal issues as to where i would be able to recover...family issues...
                            i am thinking about next spring....winter is too difficult in this part of the country....

                            thanks for the concern....it is much appreciated!

                            jess
                            Last edited by jrnyc; 09-02-2011, 06:43 PM.

                            Comment


                            • #44
                              Hi Jess,

                              I appreciate you being candid about your situation. It's no fun living life worrying about the "What Ifs" that very frequently do not come to fruition. My advice is to consider how has your condition/pain/progression of curves, etc. improved, stabilized or worsened over the past few years. That is how I look at certain situations in my life. 5 years ago when I learned my curves were ~40*, my pain was bad but there wasn't a plan for surgery in my mind at that point in time. For me, I thought I could grin-and-bear-it. I did until June 2011. When the realization hit home that my situation was worsening at a fast clip (see current degrees in my signature line), there is no doubt I am ready for surgery. As it stands, my health has diminished greatly the past few months and I no longer want my daughter and husband to see me deteriorate any further.

                              You are in my prayers for guidance in your journey.

                              Warmly,
                              Doreen
                              44 years old at time of surgery, Atlanta GA

                              Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
                              Post-Surgery curves ~10 degrees, regained 4 inches of height

                              Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
                              2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

                              http://thebionicachronicles.blogspot.com/

                              Comment


                              • #45
                                thank you very much for the kind thoughts and prayers...

                                i hope if surgery is your desire, then it becomes reality for you...
                                i hope Dr Lenke tells you it is a "go" and you can proceed with the plan you believe is
                                best for you...

                                i retired 4 years ago due to pain...
                                i expected it to get easier, not working a full time job and a part time job anymore,
                                even though i loved my work very much...it was hard work and physically became too
                                much....climbing 5 flights of stairs all day long to get (sometimes violent) children who
                                needed help was hard....it was the physical aspect that was too much...i loved being with the kids as much as i loved being with the addicts nites and wkends....even Dr Lonner
                                thought i should stop work...
                                not working did not help stop the pain from increasing, much to my surprise...i think
                                the discs have gotten worse, because per Dr Lonner, my curves have not increased in
                                several years...
                                so...not to say my curves will NEVER increase, but as of now, i can not say i need surgery
                                due to curve progression...i could say i need it due to discs getting worse....

                                best of luck
                                jess

                                Comment

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