My son was born with a tethered spinal cord. We were told by the doctors that he may never walk or have any leg function and could effect his bowels as well, which was total opposite. He had surgery when he was 9 months old to release the cord. We was told at that time that he may not start walking until he was about an year if that. Well by the grace of God my son started walking when he was 9 1/2 months old, two weeks after surgery. He started to develop scoliosis within a year after surgery, which was up to a 17 degree curve. After several months and many prayers we went back to the doctors and the scoliosis was completely gone. He is now a healthy and very active 4 yrs old boy. God truely blessed us.
My daughter was born with a scar-like veiny patch of skin in the shape and size of an eye on her lower back. Her ped. Doc had an ultra sound ordered which showed nothing. Her doctor said we had nothing to worry about because her legs were moving normally. I felt uneasy about her diagnosis. MOM’S, ALWAYS GO WITH YOUR GUT! I felt the spot was changing with more red like veins, even though most people would not notice because they were so tiny. I went to see her several times about this and wanting a referral to a neurosurgeon. She refused to give me one and told me I would be wasting their time. Once at my ‘being paranoid about my daughter’ she even rolled her eyes at me! Now I have a family of 6 nurses and one doctor. They all told me I was worrying for nothing if her Doctor said she was ok. My husband and I argued about it a lot. One day I called my dad with my worries and he agreed with me she needed a neurosurgeon to tell us if she was ok. Called up the doctors office and told the nurse to not allow the doctor on the phone to talk to me, I refuse to talk to her I want a referral to a specialist. The doctor gets on the phone anyway and says again I’ll be wasting their time. So she wanted to refer me to A PLASTIC SURGEON! I swear this is the truth. Fine, I’ll take it. I just figured they might know what this was. ( the doctors referral to the plastic surgeon she said was to fix the issue when she was older, make it not look so veiny). The plastic surgeon looked at my daughters back and right away referred me to a ped. neurosurgeon who, after giving her an mri the next day, told us she had a tethered spine, and without surgery could suffer from possible paralysis, tumors in the spine and other issues. He actually shifted around some other scheduled surgeries so he could perform hers the next day! What an Angel! And yes, I was so scared, but I trusted him. He actually called me that night before the surgery to see how I was doing. The surgery went well. She fully recovered and has no issues. At first they told me we would have yearly apts. through her early teens, but at age 7 he said we were no longer required to have follow-ups. And you can sure bet that after my daughters surgery I ‘followed up’ with the pediatrician who’s bed side manner was as mixed-up as her diagnosis. I found out by accident that she was dismissed by the hospital she worked for because of another issue that happened before my daughters.
My daughter has Tethered Spinal Cord Syndrome. Because of that she has a wide virety of neurological problems. Because of the damagae to her spine she now has Syringomyelia and Hydromyelia. I am on this site frequently. If you have any questions or concerns feel free to ask. We have been going through this for over 6 years.