Does anyone have experience with Tethered Cord Syndrome in infants? I am looking to find other parents who have gone through this with thir kids. Did your child have surgery? How are they doing now? Thanks mom of infant with TCS
Our 18 month old daughter had surgery at Children's Hospital one week ago today, Wednesday. Pre-surgery morning she was crying of course. Before they wheeled her away, they gave her a med which the nurse described as like weed, and then she was all smiles. Surgery took approx 1.75 hours with Dr. Sun. Post-surgery, she was dismayed at why she had stuff hooked up to her arms. She had to stay horizontal for approx 24 hours. On Thurs, she was upright and in good spirits, talking, babbling, eating fine. Friday we came home and it was business as usual. She was crawling and walking. No pain through out the process. Literally, things were back to normal. Her tethered cord was not tight, so we caught it in time. I think the whole process was more stressful for us (the parents) than for her. So far so good. The only problem we are anticipating is with our insurance company because we learned some info AFTER the surgery. I can probably tell you a lot more but am trying to keep this short. If you have further questions, can you contact the moderator to get in touch with me? Anonymous
My daughter has tethered cord syndrome as well as syringomyelia, which were both diagnosed with an MRI around 6 months. She had a laminoplasty to release the tethered cord when she was 10 months. We were really scared about all of this, but Dr. Peter Sun at Children's Hospital Oakland is fantastic and the surgery went as smoothly as it possibly could. The entire CHO staff worked very hard to make the experience as painless as possible. Although I wouldn't wish the experience on anyone (surgery is just generally stressful, especially when it's your baby), my daughter is doing really well now! There is barely even a scar and she doesn't seem to be in any pain. The surgery itself involved spending 2 nights in the hospital before she could come home, but once home she was totally fine and didn't even need painkillers. Babies are so resilient! I understand there are varying degrees to how serious a tether is though, and my daughter was lucky enough to have a simple tether so the surgery was not as difficult. I would talk with a neurosurgeon and have him go over any MRI results you have to determine how complex the tether is and then go from there. There is also a small risk of ''retethering'' in certain types of tethers, but with a simple tether it is very unlikely to ever occur. Surgery was mandatory in our case because of my daughter's syringomyelia. Good luck with everything! ashley gurling
My best friends daughter had the surgery. She was 18 months at the time and not walking. Had the surgery and started walking shortly after. Never had any problems and is now a perfectly healthy, normal 5 year old. anon
My daughter, now 20 and doing great, was diagnosed with Tethered Spinal Cord at age 7 and had her first surgery then. She had a second surgery at 14. The first was to release the tether at the bottom of her spinal cord, the second was to remove a piece of bone that was growing across the cord, causing it to split, and to drain a cyst inside her cord. Both surgeries were done at Children's Hospital of Oakland, her surgeon for the second was Peter Sun. She received excellent care, and had follow-up MRI's for several years, but is now considered done. My understanding of this condition is that it must be corrected surgically, and sooner is better, to avoid possible dire neurological consequences. If you would like to know any more about our experience, please feel free to email me. mg
My 8 month old daughter was just diangnosed with tethered spinal cord syndrome which our pediatrician noticed as a crooked butt crack. We are seeking a second opinion. The doctor recommends the surgery, based on an MRI that shows a ''defect'', but it is still our decision. Has anyone have experience with this syndrome and had surgery at Kaiser. We have seen one of the pediatric nuerosurgeon. Any recommendations on pediatric nuerosurgeons? thanks anxious mom
Hi worried mom, I feel you on how scary it can be to put your daugther/son through neurosurgery to release a tethered spinal cord. We went through this experience when our son was 1 years old. It was done at Kaiser Oakland; Dr. Zovickian and Dr. Peng operated on my son. The good news is that surgery went well, he was up and moving around 5 days later, and six months later we had an MRI that confirmed his cord is free and there shoud be no further complications related to the issue. He is now a two-year old active toddler, and we have put this experience behind us. Believe or not, it is a ''routine'' procedure and according to the doctors, there are minimal complications associated with the surgery (mostly related to undergoing back surgery). Kaiser made us feel confident in their team and they treated us really well. There were some downsides: our surgery date was changed twice to make room for urgent surgeries, the doctors were scant with information and the appointments felt rushed, the wound on our son's back did not heal properly (I think the stiches were too tight, their explanation was that his body reacted to the stiches causing the wound dehiscence), and there was scarring. All in all, we are relieved that it is all over, that we corrected the issue, and it is no longer a looming unresolved thing. Hope this is helpful. Blessings to you and your family. nico
We recently went through the same thing at Kaiser Oakland. At about 4 months our son's pediatrician saw a strange ''cleft'' at the top of his bottom crack. We did ultra sound and MRI. Nothing conclusive but definitely abnormal. They said his chance of developing problems was about 50%, but if problems did develop, they were difficult if not impossible to treat. We felt the surgery was a must. Neurosurgery (Dr. Pang and PA Smith) were good. Pang is supposed to be the best (literally), but he is an odd guy. Had 2 surgery dates cancelled because of emergencies, and this surgery is not considered emergent. You'll have pre-op and pre surgery appts and blood work. My best advice is to try to be patient. When our appointments were canceled, we were very disappointed because we were ''prepared'' but we were ultimately grateful that our situation was not an emergency. Our son spent 2 days in the PICU - not fun. Nurses and staff are great, but being in the hospital is never fun. It took about 2 more weeks at home for him to be back to normal, but he's doing great now. I would be very willing to talk to you or email you more info about any of it. Good luck! lisa
First - I'm sorry to hear that you're in this situation, & good for you for getting a second opinion. I know how scary the tethered cord diagnosis is (the surgery sounds scary, but the potential for permanent damage without the surgery sounds scary too!). We just spent the last two years with a ''maybe'' diagnosis for our now 2-year old daughter, who also has a crooked butt-crack. She was closely followed by her Kaiser pedi-neuro team (Dr. Zovickian & Dawn) from age 6-mos to 24-mos. I felt that Dr. Z was great - he showed us her MRIs & explained what he was looking for. No symptoms presented, and the 24-mos MRI satisfied the team that no tethering was present. Perhaps our situation can reassure you that Kaiser doesn't always rush into recommending surgery? That said, I do hope you get some feedback from a parent who has actually gone through the surgery at Kaiser, since that's likely what you are facing. Also, a parent posted a question about their 2 year old child's tethered cord in the April 6th Advice Wanted newsletter and there were several nice responses in the April 13th Advice Given newsletter, including at least one from a Kaiser patient who's child had the surgery. -good luck! sofia
There is a wonderful group of poems by Doreen Gildroy in the current May/June issue of the American Poetry Reveiw, about her experiences and her baby's experiences in the hospital for surgery to untether her daughter's spinal cord. Carol
My 2 year old son has just been diagnosed with a tethered spinal cord - if anybody out there has dealt with this, I'd be very grateful to hear about your experience. He seems to be in a bit of a grey area in that his MRI wasn't totally conclusive, and the diagnosis is based in part on the fact that he runs funny - but our neurosurgeon is unequivocal about the need for surgery. I'm interested to know if the remedy for your child involved surgery, what symptoms your child displayed, was there an improvement after the surgery, and was the diagnosis clear from the MRI? How was the recovery, both in and out of the hospital, and how long did it take? Who performed the surgery, and were there any complications? Thanks for any information you can provide. worried mom
Hi -- I am a pediatric physical therapist who has worked extensively with spina bifida and tethered cord patients. I am thinking that your neurosurgeon has some very definitive data besides the fact that he runs funny from which to make his recommendation for surgery. Maybe you know of these other facts and just left them out for simplicity's sake. For example, does he have any spasticity, especially in his legs? Increased tone? Curvature of his spine, especially one that seems to be worsening? SOmetimes a tethered cord does not show on a scan, especially if it is in the area known as the cauda equina, at the end of the spinal cord. My guess is that he has some information, and it is certainly worth discussing with him if he has not already. Usually, the surgery is pretty quick and recovery good, although they will probably continue to follow up with scans in order to make sure that it does not re- tether, which it can do. My advice to you would be to sit with him and clarify exactly what it is that he is seeing that is making him feel so strongly about surgery. If it is a tethered cord, that is your only option, to be sure, but it sounds like you are unclear as to what it is that he is seeing and that is causing him to be adamant about surgery. It will probably ease some of your anxiety! GOod luck! F.
We went through this last year - my then-2-year old had problems with her right leg, was diagnosed with tethered cord on MRI (there was controversy about the reading too) and had successful surgery last summer. We consulted 4 major pediatric neurosurgery groups in the Bay Area (Children's, UCSF, Stanford) who all agreed about the need for surgery though had slightly different approaches, as well as osteopaths and body workers, and ended up staying at Kaiser Oakland where, all things considered, we had a good experience. Her leg has shown great improvement after surgery with physical therapy as well as some other body work, and she's completely toilet trained. It was an ordeal for everyone but we're very relieved to be on the other side! There was definitely significant pain and trauma for her, but it's amazing how resilient kids can be. On a conscious level anyway, she now remembers none of it. We did take her to a child psychologist for play-therapy which I think was helpful. We also got some good advice from another parent who had been through it about how to prepare her for the surgery. She was an anxious kid to begin with and this is still true, but overall she is thriving. For us, the decision-making was the hardest (for better or worse, we are both physicians), followed closely by the immediate post-op period. Good luck!!!! Amy
My now 16-year-old daughter was diagnosed with tethered cord when she was 7. She had no symptoms (but she did have very thin legs, possibly due to the tether) but the surgery was recommended to prevent any neurological damage that might occur as she grew bigger. Her surgery was performed at Children's Hospital of Oakland, by a Dr. who is now retired. She had a second surgery when she was 14 to correct another tethered site. This was also at CHO and the surgeon was Peter Sun. She still had no neurological symptoms, however she had chronic back pain, which unfortunately was not helped by the surgery. The care at CHO was excellent, and she had no significant problems with the recovery. There is quite a bit of information on the web about tethered cord, just do a google search. You can email me if you would like more information about our experience. I know it's a scary diagnosis, but it is definitely a correctable problem. mg
Dear worried mom. I am feeling for you. I have a daughter who had tethered cord surgery at the age of 9 months. The surgeon said it was a routine surgery, and we thought that was cynical. After all we were not talking about removing tonsils or an appendix, and routine to him was very exceptional for us.
I was scared to death. I had nightmares of her not waking up or at least not being able to walk afterwards. But, of course it all turned out well.
She was diagnosed by MRI which was taken as a precaution because she had other spinal conditions that frequently coincide with tethered cord. She had no visible symptoms.
The surgeon was Dr. Sun at Children's Hospital Oakland. He was great. He answered all our questions prior to surgery, was very matter of factly and calm and professional. He did a great job. The surgery was uneventful - less than 2 hours, and so was her recovery. She was discharged after just 2 days. She was on morphine for about 24 hours, but only on ibuprofene after discharge. This is not unusual. I have since met a number of other kids who had this surgery, all performed by Dr. Sun. If you research him you will find that he has been listed as the best in his field in different media for years. His nurse practioner, Sue Ditmeyr, is also a jewel. I am not sure there is another neurosurgeon in the Bay Area performing this type of surgery. So, if Dr. Sun is your son's doctor, you are in the best hands.
Please trust his judgement. Untreated tethered cord can lead to quite severe nerve damage causing malfunction of lower body organs and extremities.
Our daughter had issues with her bladder and kidney function already which were not diagnosed until after they found the tethered cord. These problems were succesfully treated as well.
Good luck. If you need any more information, please feel free to contact me directly. Mascha
I don't have any advice, just support and an understanding of what you're going through. My now 2 year old daughter has been monitored for tethered cord syndrome since she was 6 months old, when our pediatrician noticed that her butt-crack (yes, her butt-crack) was crooked. As Kaiser patients we were quickly referred for an MRI and to the pediatric neurosurgery department. Her MRI at that point was inconclusive and our neurologist chose to monitor her for other signs of the tethered cord every 6 months until she turned 2 (that's now). We were told to look for things like curled toes & loss of bladder control (in a 6 month old?! sometimes those docs don't think things through).
She's going in for her 2 year MRI tomorrow & the follow up with the neurologist will be next week, so at this point I can't tell you the outcome. We have our fingers crossed for an uneventful anesthesia & positive outcome. As far as I can tell from reading online, doctors are very cautious with this condition and almost universally recommend surgery.
All that said, I do remember that before our MRI we were assured that the MRI is usually conclusive and I was frustrated and surprised that ours wasn't. It's interesting for me to hear that your child's MRI was also inconclusive. I wish I had the results from our impending MRI to share with you at this time. Have you considered getting a second opinion?
I hope that you find the support and answers you need on this community. My thoughts are with you and your family. It certainly is a scary diagnosis, but I am also relieved to have access to doctors who can diagnose this and to skilled surgeons who can fix it. All the best, potentially tethered mama