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Tethered Cord Surgery

Hello, I'm 18 and just joined this page. I'm getting Tethered Cord surgery on August 20th and just want to know what to expect. I already know I'll probably be in the hospital longer than most because of pain control. How long will I be expected to be on my back and how long is recovery normally? Any answers would be great, thanks!


  • Hi Alex,

    I am 47 and had detethering surgery on April 15. I just saw your post and relized today is your surgery. I hope it goes great for you! My tethered cord was congenital due to SBO at L4,5,and 6 with a bony diastem which split the cord. Pain preceding surgery was awful. Could not sleep at night, could not sit, could not lie down, it was miserable. The road to a diagnosis was long and went through many different type of docs. Finally a chiropractor ordered the MRI which led to my diagnosis. Surgery lasted 8 hours and I was attended by two surgeons. I am a group exercise instructor and was in pretty good physical shape before the surgery so my recovery went better than anyone expected (including myself). Was told up front that I would be in the hospital 7-10 days followed by up to 2 weeks of in patient PT. I was able to go home on the 5th day (4 nights) post op. They wanted me to be able to walk to the bathroom by myself and also to go up / down a couple of steps. Your age definitely works to your advantage. The worst part of recovery was lying flat in the hospital bed for 3 days. Your back muscles have probably been sliced in half so you cannot easily adjust yourself. Eating is the worst! Eating while lying flat causes awful indigestion. Try to get a family member to bring something tummy soothing like milkshakes. I also found that Clif bars went down easily. After getting home keep moving! Make yourself get up and walk even if it is just a small lap around the living room. I also found that I felt sooo much better the fewer pain pills I took. Don't get me wrong, you will definitely need them in the beginning. But they cause awful constipation, dizziness, inefficient sleep, etc. I hope this note finds you doing well and exceeding all expectations!
  • kamgramkkamgram Posts: 483
    edited 08/20/2014 - 3:27 PM
    I read your posts and wanted to let you know I pray your surgery went well today and you won't have alot of pain. My grandson who is 4 was born with a cleft at very bottom of spine which makes his little buttcrack look crooked. His doctor looked at it on his very first visit and said it was probably a spinal bifada that just happened to close before birth and said it looked fine. Well 4 years later and he has several toes on each foot that are turning to the side and walks on his tip toes. He also complains with leg and back pain at night. We took him back to New ped today and they are sending him to neurologist after examining him. We are scared to death after reading about tethered cord on line. Hoping he won't have to have surgery but preparing ourselves incase he does. Just wondering what kind of symptoms you all experienced through the yrs????
  • rhondambryantrrhondambryant Posts: 3
    edited 09/01/2014 - 7:45 AM
    Hi kamgram,

    My symptoms over the years have been primarily leg and back pain. The SBO was diagnosed in my twenties and doc warned that this would cause low back pain. I have always been fitness minded and have focused on core strength to keep symptoms at bay. This worked fine up until about a couple of years ago (age 46ish) when symptoms escalated and I learned of the tethered cord. I started having injuries in my lower joints - ankles, knees, hips. Went to a couple of different orthopedists who treated the symptoms but did not identify the underlying cause. Symptoms continued to escalate. While teaching a class I would fall down for no reason, try to do a big step up and miss the mark, incontinence was occasionally a problem with no warning, pain at night would be so bad that I would just have to get up and walk around the house all night. I started to get desperate for relief and tried everything from chiropractic to massage. Thankfully an observant chiropractor said "something doesn't look right" and sent me for an MRI. He is my hero.

    It is my understanding that these problems could / would have probably progressed to urinary and bowel incontinence, sexual dysfunction (no sensation), paresis and paralysis. The many specialists I talked to just confused me. Their opinions varied greatly. One doc even told me that I should just get a block and see if things "settled down". Was later informed that a block is very dangerous considering the malformation of my spine. Another doc said that he would wait until incontinence was more of a problem. Yet another doc said that he would do the surgery, and bring his partner in to assist, but would be up all night worrying before surgery. The majority agreed that surgery was needed. My surgery lasted 8 hours with 2 surgeons and took place in April. Symptoms have been almost totally relieved and I am hopeful that I will return to full strength. (Hubby thinks I am unrealistic here, functional strength has returned and I am better than I was before surgery. As a fitness instructor I am aiming for optimal health - want to be able to do mud runs, teach classes, go rock climbing, etc.) Incontinence has ceased to be an issue. Hope I am not oversharing here, just trying to fully explain this journey as an adult. Finding a surgeon to help me as an adult was not easy. Your grandson is blessed that he has learned of this condition so early. I actually spoke with a couple of pediatric surgeons while seeking advice because there are so many more of them who perform this surgery. Praying so much wisdom for you and your family as you make this difficult decision. For the record, I talked to a wonderful pediatric surgeon at EDITED He has a stellar reputation if you are anywhere near the area and looking for a second opinion.

    Post edited by Sandi. Naming of physicians or medical facilities is not permitted on Spine Health.
  • Thank you so much Rhondambryant for responding. My grandbaby has an appt in the morning with a Neurosurgeon and both myself and his mom are worried sick. I have a feeling he will have to have surgery. I have had many orthopedic problems and many back surgeries. His mom was born with congenital hip dysplasia and now at age 29 is having severe hip pain. It makes me angry that his doctor didn't see an issue with the cleft at his first appt at 3 days old and has continued to say it was not an issue. He has always had balance issues and has had stitches in his head 2 times and a concussion because he is always running into things or falling. I will let you know after our visit what they are planning. Again thank you so much for your kind response :)

  • Bless his heart, how frustrating! Hope all went well this morning. Will be checking back.
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