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  • #61
    That's good to know that there is at least a choice for those who are concerned about this issue.

    For all the other problems I have, needing contact lenses isn't one of them so at least something in me is still working okay!

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    • #62
      Originally posted by AndreaM View Post
      PS - Just found out today that Thimerosal is also in contact lens cleaning solution so now folks are getting it into their eyes as well!
      It's also commonly found in mascara, probably to try to avoid eye infections. Look at ingredients if it concerns you.
      Last edited by Ballet Mom; 03-14-2011, 05:14 PM.

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      • #63
        Originally posted by Ballet Mom View Post
        It's also commonly found in mascara
        Nature has given me permanent extensive black outlines beneath my eyes so shouldn't need mascara! :-D

        Comment


        • #64
          Andrea
          i never meant to imply you have Lyme disease..
          i was stating that i know a little bit about doctors who don't go the distance for their patients, and stick with them until they find the cause of problems...
          i was also explaining why i lost faith in traditional medicine...

          i think the only person who could evaluate your spine would be a top scoli surgeon...not for you to have surgery, but to get a top opinion from the very best in the field....

          best of luck
          jess

          Comment


          • #65
            Originally posted by jrnyc View Post
            i think the only person who could evaluate your spine would be a top scoli surgeon...not for you to have surgery, but to get a top opinion from the very best in the field....
            Plus a top neurosurgeon to explain the nerve damage which may or may not be related to the scoliosis and ancillary issues in the lumber. Seems like a very complex case.
            Sharon, mother of identical twin girls with scoliosis

            No island of sanity.

            Question: What do you call alternative medicine that works?
            Answer: Medicine


            "We are all African."

            Comment


            • #66
              I was supposed to be seen by an ortho consultant some years ago and had to travel by plane to do so. Instead of seeing the consultant, I saw a junior doctor who asked me questions and a little later on came back in to say he'd spoken to the consultant and nothing could be done! I complained to my doctor when I returned home saying it had all been a complete waste of time and I didn't feel I'd had a proper consultation. He agreed with me and referred me back again. They listened to me the second time and, when I asked to be referred to the best ortho consultant in the UK at a hospital several hundreds of miles away, it was done. I stayed in hospital for two nights, had x-rays, scans and a thorough examination only to be told the information I gave above. I am sick of hospitals and have spent time in just about every one known to me. I do feel I have been properly treated and accept that there is nothing that can be seen which is potentially treatable. I also have been of the opinion for many years that I was dealing with two very different problems - the scoliosis (which actually hasn't given me too many problems) and something else which has completely destroyed my life.

              I'm fortunate in that I am a lot better than I was just over two years ago when I had already prepared my funeral service and accepted I was going to die before long in terrible pain and was already displaying the early signs of dementia. My life was miserable and I've been given a second chance. Perhaps this is why I am so determined to find out what is actually wrong as I know that I could still improve further if I could just find out what causes these setbacks. I now know I have the potential to feel pretty well yet something keeps affecting me badly from time to time. I don't feel, if it was an ongoing disability, that I'd have good spells and bad but it would rather be a gradual and constant deterioration. That is how it was until I started on B12 and got instant improvement. That would not happen unless the B12 was addressing a serious deficiency in some level. I know I am not deficient in B12, in fact I'm completely awash with the stuff, but it seems to be doing something unseen.

              Are there any threads on here which describe the health problems of Scoliotics over the age of 40? I want to know how older sufferers are faring. I was apparently perfectly healthy from the time of my surgery at 19 until just after the birth of my second child when I was 35 (I am now 50). My health collapsed in a matter of months and kept going from bad to worse so I don't feel I can blame that on the scoliosis.

              Where are all you senior scoliotics? Please tell me what your health is like now many years after your surgery.
              Last edited by AndreaM; 03-14-2011, 07:08 PM.

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              • #67
                Originally posted by Still Hoping View Post
                I meant we've gotten different measurements and conclusions from different doctors. For example, one doctor (orthopedic) looked at her growth plates and actually said she was almost done growing. Another doctor a week later said that she still had years to grow, looking at the same xrays! Which do you believe?
                Hi Still Hoping,

                I meant to respond to this and forgot. My daughter has an orthopedic surgeon who said she was at Risser 2 for a couple of x-rays and then in following x-rays went back to Risser 1. Sometimes it's hard for the doctors to see exactly with the x-rays. I've even read that when the ossification of the iliac apophysis is in the final stages, it can be very difficult to see exactly where the ossification is.

                Also, even using the same x-ray, one doctor of yours could base the final growth on obtaining Risser 5, whereas the other doctor could know of the studies that show that vertebral growth can continue to occur even after Risser 5. So it's not as black and white as people like to state. It's a shades of grey world.

                Comment


                • #68
                  Originally posted by AndreaM View Post
                  I was supposed to be seen by an ortho consultant some years ago and had to travel by plane to do so. Instead of seeing the consultant, I saw a junior doctor who asked me questions and a little later on came back in to say he'd spoken to the consultant and nothing could be done! I complained to my doctor when I returned home saying it had all been a complete waste of time and I didn't feel I'd had a proper consultation. He agreed with me and referred me back again. They listened to me the second time and, when I asked to be referred to the best ortho consultant in the UK at a hospital several hundreds of miles away, it was done. I stayed in hospital for two nights, had x-rays, scans and a thorough examination only to be told the information I gave above. I am sick of hospitals and have spent time in just about every one known to me. I do feel I have been properly treated and accept that there is nothing that can be seen which is potentially treatable.
                  Wow that's quite an ordeal!

                  I think they would take your case on that TV show "Mystery Diagnosis." Have you considered that? I take it you are in the UK but maybe they would travel there.

                  I also have been of the opinion for many years that I was dealing with two very different problems - the scoliosis (which actually hasn't given me too many problems) and something else which has completely destroyed my life.
                  To this "Dr. Bunny", I concur. (smiley face)

                  But I can't understand why you don't have more pain from the L5-S1 disc or all the other issues in your lumbar? Have you lost the nerves there? To the other players in this sandbox... does that sound like a fusion down to L5 31(!) years ago plus all the other issues in the lumbar can be painless??? I can't fathom that unless it isn't unusual.

                  I'm fortunate in that I am a lot better than I was just over two years ago when I had already prepared my funeral service and accepted I was going to die before long in terrible pain and was already displaying the early signs of dementia. My life was miserable and I've been given a second chance. Perhaps this is why I am so determined to find out what is actually wrong as I know that I could still improve further if I could just find out what causes these setbacks. I now know I have the potential to feel pretty well yet something keeps affecting me badly from time to time. I don't feel, if it was an ongoing disability, that I'd have good spells and bad but it would rather be a gradual and constant deterioration. That is how it was until I started on B12 and got instant improvement. That would not happen unless the B12 was addressing a serious deficiency in some level. I know I am not deficient in B12, in fact I'm completely awash with the stuff, but it seems to be doing something unseen.
                  This just sounds harrowing. Have you had a metabolic geneticist evaluate you and your family for any of those conditions besides homocystinuria? I think you said you ruled that out in your case at least, yes? There are probably a million such ailments, only some of which have been named. I am beginning to understand your frustration.

                  Are there any threads on here which describe the health problems of Scoliotics over the age of 40? I want to know how older sufferers are faring. I was apparently perfectly healthy from the time of my surgery at 19 until just after the birth of my second child when I was 35 (I am now 50). My health collapsed in a matter of months and kept going from bad to worse so I don't feel I can blame that on the scoliosis.

                  Where are all you senior scoliotics? Please tell me what your health is like now many years after your surgery.
                  You can start one if you can't find any.
                  Last edited by Pooka1; 03-14-2011, 07:55 PM.
                  Sharon, mother of identical twin girls with scoliosis

                  No island of sanity.

                  Question: What do you call alternative medicine that works?
                  Answer: Medicine


                  "We are all African."

                  Comment


                  • #69
                    people over the age of 40 are all over the forum...not in any special section...

                    i have often heard that people with MS get much worse after child birth....

                    i am surprised that there are so many doctors who have the nerve to charge so much money for services, and then come up with the diagnosis of "we don't know what is wrong"

                    and i don't know too many patients with bad lumbars who do not have pain...lumbar problems tend to cause pain...as i can testify to..

                    jess

                    Comment


                    • #70
                      Originally posted by jrnyc View Post
                      people over the age of 40 are all over the forum...not in any special section...
                      Ah I think I see the problem... the section for people over 40 is called "The New 30" with a sub-title of, "Ti Ed's Fantastic Elastic Scoliosis Emporium."

                      It's easy to miss. (smiley face)
                      Sharon, mother of identical twin girls with scoliosis

                      No island of sanity.

                      Question: What do you call alternative medicine that works?
                      Answer: Medicine


                      "We are all African."

                      Comment


                      • #71
                        Sharon

                        I have increased my “new” and improved age in my signature. I just cannot perform like I’m 30 anymore! A little joke, hard for me to do here lately.

                        The events in Japan have me occupied right now....

                        The people of Japan have tried so hard to deal with earthquakes and tsunami’s, it’s a battle that is hard to win sometimes.

                        I’m just somber and mournful right now.
                        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


                        • #72
                          Originally posted by titaniumed View Post
                          The events in Japan have me occupied right now....

                          The people of Japan have tried so hard to deal with earthquakes and tsunami’s, it’s a battle that is hard to win sometimes.

                          I’m just somber and mournful right now.
                          Ed
                          That situation is off the hook. An 8.9 is the fifth biggest quake in the last several decades. Folks may not know that that is a log scale... the energy goes up exponentially.

                          We live on a planet where plates are moving and there are thrust faults surrounding the Pacific plate which is subducting under many other plates. Earthquakes and tsunamis ensue.

                          So many people are missing and so many lost everything. Nature is just happening and people get in the way. Suffering all around.
                          Sharon, mother of identical twin girls with scoliosis

                          No island of sanity.

                          Question: What do you call alternative medicine that works?
                          Answer: Medicine


                          "We are all African."

                          Comment


                          • #73
                            Originally posted by AndreaM View Post
                            I have just been told by a Professor that my Scoliosis is almost certainly due to the large amount of dental amalgam fillings I had as a child!

                            I was recently contacted by a woman who worked as a dental nurse and regularly handled the amalgam paste used to fill teeth. She went on to have serious health problems and had a daughter who developed Scoliosis in her teens. This woman has been proven to have heavy metal allergy to mercury. Dental amalgam is 50% mercury and it is also in some medications and vaccines, including the MMR and 'Flu jabs!

                            When I reacted badly to the Flu jab i had in December (and am still trying to recover from), I took this subject more seriously and intend to have a particular test (Melisa Test) to determine which heavy metals I may be allergic to. Dental braces, and metal implants of any sort can all cause problems, including spinal rods or wires and can also cause other problems such as child autism or Multiple Sclerosis.

                            This link will give more information and there is a Scoliosis questionnaire you can complete on the website: http://www.mercurymadness.org/
                            wasn't the case for me. I had my scoliosis long before I had ANY fillings or braces on my teeth.
                            __________________________________________
                            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


                            • #74
                              Originally posted by debbei View Post
                              wasn't the case for me. I had my scoliosis long before I had ANY fillings or braces on my teeth.
                              From what I can gather, it is only likely to affect those who have a sensitivity towards heavy metals, however, out of interest, did you have all the usual childhood vaccines, some of which until more recently contained Thimerosal?

                              I now have my own doctor's cooperation to take the blood sample required for this test (which I actually ordered from a different website than the one to which I referred earlier) and am just waiting for it to arrive in the post.

                              It will be nice to know one way or the other.

                              Comment


                              • #75
                                Originally posted by AndreaM View Post
                                From what I can gather, it is only likely to affect those who have a sensitivity towards heavy metals, however, out of interest, did you have all the usual childhood vaccines, some of which until more recently contained Thimerosal?

                                I now have my own doctor's cooperation to take the blood sample required for this test (which I actually ordered from a different website than the one to which I referred earlier) and am just waiting for it to arrive in the post.

                                It will be nice to know one way or the other.
                                Is that the sound of my eyes rolling back in my head that I hear?
                                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

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