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Tethered Spinal Cords

Updated on June 19, 2013

Spinal Cord


Tethered Spinal Cord

When my daughter Angel was born back in 2004 we were told that she has many birth defects and one of them is called a Tethered Spinal Cord. I did not understand what this meant or any of the other problems she had. This meant research time for Mom and Dad. We spent so many hours reading information that we would find online. We read so much that some of our Doctors would tell us stop reading because she are going to find information that is incorrect or that has changed since it was written and you are going to drive your selves crazy. Well we tried to listen to them but as parents that was impossible and we continued to read and learn. Well having a tethered cord can cause many different problems for the patient, It can cause some of the following if not all:

  • back pain
  • leg pain
  • weakness or numbness in the legs or feet
  • difficulty standing or walking
  • fecal and/or urinary incontinence

Information on a Tethered Spinal Cord

When Angel was diagnosed with this condition we were referred to NeuroSurgery for a consult. They decided that Angel with have to have her cord released as they call it. We were told that some of the problems with this condition is of course the risks of spinal surgery. This could always result in paralysis so we had to weigh the risks and benefits of the surgery. Well the benefits out weighed and Angel had the surgery when she was about 1-1/2 years old. She recovered quite quickly from the surgery and we never really had any complications after that. We were always told to watch her feet to see if they start turning in or if she complains of back pain or loses continence. Well it was very difficult for us to see this coming as Angel has been on dialysis for almost 5 years and she has does not urinate.And she does Bowel Management(which I wrote an article on if you are interested you can just go to my profile and you will find that information) so we would not know if she lost function on the ability to be continent. Angel always complains of leg pain because from the dialysis she developed Rickets( a bone disease that is usually from lack of vitamin D)(this bone disease cause weakness and causes the bones to be brittle so they can break very easily) So since she could not really tell us that these things were happening we were not able to tell that the cord was becoming tethered again until just a few weeks ago when she really started complaining of back pain. After three days in a row of her saying that her back hurt and it bothered her for us to rub it or even put the heating pad on it it we gave her some Tylenol for relief of the pain and came to the realization that we needed to see if she would need to re-evaluate the status of her cord.

With much anxiety I grabbed my daughters Ipad and started reading on re-tethering. A lot that I read was leading me to believe that she was not experiencing a re-tethering because they say the patient has a lot of weakness but not usually a lot of pain. So I allowed my self to believe that it is probably muscles causing this pain and just to be safe made an appointment with Neuro Surgery.I insisted on seeing the same Doctor who originally did her surgery and I am glad I did. She sent Angel for an MRI of her total spine. This test took about 1 hour and I was very very proud of my baby for sitting still in that machine with all that noise for so long. She truly is an amazing person with such strength and understanding.

After the MRI we had to wait one more week to see the Doctor. Two days before the appointment Angel did not complain about pain nor the day before. Dad and I were just hoping that maybe just maybe everything was good and no worries were to come. Only to our disappointment we found out yesterday not only is her cord tethered again but it is causing scoliosis and her spine is getting pretty out of shape. This is not good news as that means we have surgery right around the corner. We were referred to and Orthopedic Surgeon that specializes in Scoliosis. We will go see them in a few weeks and then surgery will be scheduled after their assessment.

After everything we have been through with my daughter we have learned more than we ever knew we would have to and if I could share this information and help even just one other person I will feel like I have done something as I am totally helpless in keeping my daughter from the pain and discomfort she always feels.

I just finished speaking with her Kidney Doctor who oversees her dialysis and she has assured me that they will get all of her information to these doctors to make sure that they understand they many reconstructive surgeries that Angel has had since they performed surgery on her in the past and all of the no-nos as I call them for her. She takes heprine( a blood thinner) regularly while on dialysis and she has many fluid and dietary restrictions. They promise to make sure that everyone that will take part in this upcoming surgical event will know everything they need to ensure that Angel goes into this surgery with the best possible outcome. Back in 2009 Angel had a failed Kidney Transplant and she wound up in a medically induced coma for almost 9 weeks. After enduring that our family has never quite been the same as we all were so scared it kind of makes us very over protective. Luckily for Angel she has many siblings who adore her and help keep her feeling normal. They bother her just most older siblings do. So now we wait on scheduling and hope and pray for the best possible outcome.

So if you know someone who was born with this condition they should know to always watch your child's feet to see if they turn in. Watch to see if they start having accidents or have weakness in there legs these could be the signs of a retethering. Also they tend to have a pulling feeling in the back. This was one of the signs for us.

Please feel free to comment on this condition

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