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    Hello, I would like to say that it was very comforting for me to find the spina bifida connection. I am a 50 year old male operated at birth, the incision became infected and I was in the hospital for the first 6 months of my life. The area healed, leaving a scar that was not very pretty to look at and it was something that I was always aware of and hiding. At 18 I had plastic surgery that allowed me to have increased confidence in my self and my appearance, but I still never felt like I fit in with anyone and remained a quiet and reserved person. My left leg is shorter, my left foot is a club foot, I have always had very little to no feeling to my left leg and the calf was always smaller than my right. I walked with a slight limp that has become very prominent and I have always accepted my disability because my parents instilled in me how fortunate I was to be alive and to be able to walk. I have led an active life pushing myself and ignoring my weaknesses. At age 30 I started to notice my right leg was becoming numb and by the time I was 40 the numbness almost equaled my left leg. At 40 I began to have sores open on my back and had surgery to remove 2 pieces of rubber tubing mistakenly left in my back from the surgery at 18. At about age 43 I noticed that walking was becoming increasing difficult and I began to fall which prevented me from wanting to anywhere other than work. At work I would hear people talk about me behind my back and make comments about my bad knee, assuming that was my problem. I also started getting muscle spasms that would cause me to fall and made driving a little scary when my foot would suddenly accelerate the gas or fall off the brake. I have burned my left leg from not noticing how hot it was when fixing a leak on my roof, I have had blisters on my foot from walking barefoot on pavement and not even noticing how hot it was. For 2 years I have had an ulcer on the bottom of my foot (from the pressure associated with me putting most of my weight on my right leg while standing) that became infected and I wound up in the hospital and am currently out of work because I had to have surgery to remove the tissue. Interestingly the surgeon used amniotic membrane to fill in the hole and covered that with cadaver tissue. While in the hospital I had a MRI of my spine that showed the following results - There is a low-lying, tethered cord. It is tethered to a large lipomeningocele with a fatty placode at the L3-4 level. There is a tiny, segmental focus of syringohydromyelia of the cord spanning the L2-3 level. It measures 3 cm in length, and only a couple millimeters in width. There is a large open neural tube defect beginning at the L3-4 level and extending into the upper sacral spine, which allows a large left-sided myelomeningocele to protrude into the paraspinal soft tissues. There is associated chronic atrophy, denervation and fatty infiltration of multiple left paraspinal and erector spinae muscles. There is mild to moderate lumbar dextroscoliosis associated with this congenital bony deformity. L4-L5 disc: There is disc desiccation without disc space nearing or bulging. L5-S1 disc: There is minimal disc bulging which is clinically insignificant. Apophyseal joint: There is apophyseal DJD predominating at the L4-5 and L5-S1 levels, especially on the right side. Impression: Large, lower lumbar and lumbosacral open tube neural defect/spina bifida vera with associated large lipomeningocele, low-lying and tethered cord and tiny, segmental syringohydromyelia. I have an appointment scheduled with a neurologist 8/29 and hope to get some answers. In my opinion the doctors that I have seen, such as primary care physicians are not very knowledgeable and have ignored my symptoms. I have asked doctors to watch me walk (because they do not watch you walk when you are sitting on the table) to see the extent of my difficulties walking, and it took me being in the hospital for the foot infection to get a MRI, only after they determined I was not a diabetic. I hope this was not too wordy and please forgive any grammar errors. I wanted to share my story with others who may be experiencing the same issues because I found comfort in reading other posts that I am not alone. I am married and have 4 children and as much as they may try to, they do not understand what I am going thru or my fear of loosing the ability to walk and not to be able to support my family. I work as a registered nurse taking care of hospice patients. Thank you for allowing me to post this.

  • #2
    Welcome on board! Thanks for that very comprehensive introduction. Please feel free to participate in any conversation here.
    Sumus semper in excretum sed alta variat!


    • #3
      Hi VH5150,

      Only just reading your post as I