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I have multiple kyphosis of the spine and much more.

Well, I guess I will introduce myself by saying that I have been down lately, which I have no problem with because I have dealt with my problems for a long time so I know how to work my way out of a, "down spell", as I like to call them. So I was sitting here at the computer looking at my friends Facebook status's and thought about researching a few of my diseases and sharing some of the info with my friends so they could maybe understand why I am the way I am a little better when it comes to hanging out with them and what have you. Now, my story is this, I am 27 and since I was 12 have been dealing with crippling back and leg problems and pain. When I was 13 I was diagnosed with type 2 Scheuermann's, which for those of you who don't know, means that unlike type 1 which most people call, "hunched back", my spine curves inward at 44 degrees instead of outward. It is in my lumbar spine or lower back. When I was first diagnosed I was told that I had two options. The first, and the one the specialist as I like to call them, wanted me to choose was to allow the surgeons to make two incisions along my entire spine basically peeling the muscle away from my spine and inserting two rods, which I called poles because they were very long, on each side of my spine. The rods contained hooks along them which would be used to basically use wires to put tension on my spine and form it in to the correct spinal positioning. The surgery had a 35% chance of success and a 65% chance of paralyzing me to some extent or worse, killing me. Since this numbers did not seem very favorable to me, my mother and I decided to go with option number two. This was to have an entire back brace made and wear that, with the idea that because I have no muscle memory in my back, the brace would basically train my muscles to hold my spine in the correct positioning. However, the rate of success was very low and more than likely it would not work, and I was told that if it did not work then I would slowly over time develop worst problems and that by the time I am 30 I will be in a wheel chair.
Now, I am almost 30 and am having a hard time staying positive. Since I had to have the surgery before puberty; because if I didn't it would be to late, because the spine is fully developed once a person is past puberty and the brace of course didn't work for me, there is no fixing the problems with my spine. Fast forward to 2014, and I have developed to much to list almost. I now have moderate/sever scoliosis in my thoracic spine, in between my lower and upper spine- sorry but am going to dumb it down a bit for my own sake lol- I have two discs that are pinched and herniated and bulge out quite a ways that make my back feel broken in that spot, not to mention that my upper spine is completely compressed. In my lower spine where my Scheuermanns is- where the problems with my life started- the whole lumbar is completely crushed and compressed together at a 44 degree angle with numerous spurs that go in multiple directions including pressing against my cord. Where my sacrum meets my lumbar I have a spur that is quite deep into my cord which causes pain in the backs, fronts, toes, basically all of both of my legs. I also have multiple slipped herniated discs through out my spine, I have I don't know how many spurs, spondylolisthesis, and was told that since a persons back is like the springs on a car or truck, which means that it supports the trunk or upper body; and since my spring is broken, that my legs have to carry my whole upper body on their own with no support from my spine. Because of this my knees and ankles are in very bad shape with no cushion left in them, and because I have osteoporosis and my back is so badly deformed my bones have basically been using all of my calcium, which mean my bones look like glass on ct scans and x-rays. I have broken my back twice that I know about in the past few years when and how I don't know; but it just fractures if I get bumped into or if I get out of bed wrong so I have to live very carefully like an egg. I also broke my neck in three places in a swimming accident in 2006 and I walked into the emergency room and they were going to send me home, but luckily I insisted something was wrong and the docs found it and couldn't believe that I walked in not crying or anything like that, but I told them I have had to learn to accept and live with pain so I do my best not to let it get to me. But anyway, because of this I have a plate and four screws holding my C3, C4, and C6 together.
There is more but I don't need to keep going, if anyone has read this far then they get the picture, I am physically damaged beyond repair and most doctors have never seen a person with all of the problems I have that is still walking without aid or not in a wheel chair, and maybe that is because since before I was even a teen I have had to learn to just deal with my pain the best I could because at that time I was to young to take narcotics and tramadol didn't do much and ib propene or aspirin or naproxen made me sick or have hives or a rash, so I just had to suck it up and deal with it until I got older. Now I am on pain meds and muscle relaxers and vitamins etc.. But as strong as I try to be it wears me down after a while and I just wish I could have one normal day where I don't hurt and where my friends and family who don't know my medical history or know but don't understand, do not say things like, I take pain meds because I want to or like them and that I don't need the muscle relaxers or pain meds. It just isn't a fair judgment as far as im concerned and I am glad that I found this site so others who have problems like myself who understand in some part at least what I am going through can share what is happening in their lives. I say these things basically because I am tired of having to take all kinds of powerful meds to help me be able to move without my whole body freezing on me and having to go to the E.R. and get meds so I can make it through another day in some sort of peace without excruciating pain and I guess I just wish things could have turned out different for me is all. Hope you all have wonderful days in your future and a great day!



  • sandisandi Posts: 6,343
    edited 09/17/2014 - 4:01 AM
    When was the last time that you consulted with a board certified spine surgeon? There have been many, many huge advances in the types of surgery offered when you were a teen and what is being offered now, improvements in technology, and operative techniques, and outcomes to surgery.
    Have you consulted recently at a large teaching orthopedic hospital with a surgeon who specializes in your condition? They are out there, and you may be surprised by what might be available to assist you in at least reducing some of the pain, and the misalignment issues.
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