violamama Posted October 30, 2014 Share Posted October 30, 2014 Anybody have experience with tethered cord? If so was it easily diagnosed? Our daughter was born with some birth defects that can include tethered spinal cord (anal atresia). We had an MRI which seemed to me to show she does have it. The sentence the radiologist wrote to summarize it mentioned something that is associated with tethered cord. Our doc is a GP whom I have met exactly one time and she seems to have zero knowledge of any of this. She's also nearly impossible to reach and gets defensive when I ask questions. She was unhappy that I wanted a referral for a second opinion on the MRI, which I think is ridiculous on her part. She's not even a pediatrician and I thought she'd be glad I was asking who she recommends for a neurologist. I would LOVE to find some moms with experience with any of this. PM if you prefer, or email miriamenglish at the mail that is hot. Quote Link to comment Share on other sites More sharing options...
Pegs Posted October 30, 2014 Share Posted October 30, 2014 The conus should lie around L1/L2. Any lower suggests a tethered cord. Did the radiologist report on this? Quote Link to comment Share on other sites More sharing options...
wapiti Posted October 30, 2014 Share Posted October 30, 2014 Tethered cord is diagnosed via MRI. The doc to see is a pediatric neurosurgeon, not a neurologist. Call the neurosurgery department at your local children's hospital for an appointment and bring the MRI. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted October 30, 2014 Share Posted October 30, 2014 Yes, you certainly want follow up with this. As mentioned above, a neurosurgeon at a children's hospital----even if it is hours away. Depending on the other issues involved you might need a peds neurologist as well. Make some calls and see if you can self refer. If you don't have a hard copy of the MRI then you can go to medical records and get a CD of it or have it sent to the neurosurgeon. If you can't self refer, then it is time for a new primary care doctor..........and it might be time for a new one anyway Quote Link to comment Share on other sites More sharing options...
Lucy the Valiant Posted October 30, 2014 Share Posted October 30, 2014 Agreeing that an MRI + follow-up with a pediatric neurosurgeon is really the best option for answers to your questions. Quote Link to comment Share on other sites More sharing options...
Loowit Posted October 30, 2014 Share Posted October 30, 2014 My DS was diagnosed with a tethered cord at the age of 10. He was having urinary, bowel, and neurological issues in his legs. I wish we had found out about it sooner. He was referred by his pediatrician to see a pediatric neurosurgeon and she is the one who ordered his MRI. DS had the MRI first and then we had our initial consult appointment with her. She did an exam, asked for his medical history, and then showed us what they had found on the MRI. She scheduled surgery to correct it and he had the surgery a few weeks later. His surgery was very successful and his recovery was much quicker than I expected. He also had very good return of nerve function, however, there is still some long term nerve damage that will be permanent due to him being older and taller when he had surgery so some of the nerves were damaged that wouldn't have been if the nerves hadn't been stretched so much. Quote Link to comment Share on other sites More sharing options...
G5052 Posted October 30, 2014 Share Posted October 30, 2014 Yes, you need to see a neurosurgeon, and if possible you need a neurosurgeon with a speciality in the lower part of the spinal cord. A surgeon who does brain and/or neck surgery isn't the one. You may also need a gasto doctor who understands how nerve malfunctions impact the lower part of the digestive system. But I'd start with a neurosurgeon ask about who else needs to be involved. As the others said, this is likely going to be at a large children's hospital or other major medical center. A family member has a tethered spinal cord and nerves from an infection following spinal fusion, and we really didn't understand all of the ramifications until their case was taken up by a team of doctors at nationally-ranked hospital. They looked at both MRI's and nerve conduction studies, and they explained variety of symptoms that other doctors we had seen didn't really grasp. Now we go to a different out-of-state clinic within a large medical center (the first one actually sent us there after doing a more detailed diagnosis). It is so nice going to a doctor who really "gets" it. We've had multiple surgeries there that have made a difference. No cure, but definitely better. Quote Link to comment Share on other sites More sharing options...
MeghansMom Posted October 30, 2014 Share Posted October 30, 2014 My daughter has VACTERLS Association. She has the V, A, C, R and had the S. She did have a feeding tube and has hypoparathryoidism again. She had tethered cord as a baby and had surgery. It has come back and she will eventually have surgery again.She just turned 11 and puberty is a time for a tethered cord to come back because of the growth spurt. She saw her neurosurgeon and surgeon this Tuesday and she will be seeing an urologist and getting an MRI. She does see a pediatric neurosurgeon. You have gotten some great advice in this thread and I would change doctors, yours does not seem to be taking it serious enough. Best of wishes and know you are not alone. It is good that you are being proactive. Quote Link to comment Share on other sites More sharing options...
Annie Elle Posted October 30, 2014 Share Posted October 30, 2014 Two of my children had a tethered cord due to spinal bifida. They were adopted internationally and though showed obvious signs of spinal bifida on their lower backs they did not receive a MRI until they joined our family. I agree with the other posters that a pediatric neurosurgeon is the way to go. They both received spinal surgery as toddlers and have had excellent outcomes. Quote Link to comment Share on other sites More sharing options...
violamama Posted October 30, 2014 Author Share Posted October 30, 2014 Thanks, all! Wow, I did not expect so many responses! Such a pleasant surprise this morning. Thank you all. We have already sent the MRI cd to a specialist in Ohio (though we live in Oregon). If we don't hear from him within a week or so, I'll see about taking it locally to a neurosurgeon (good catch, Wapiti- I meant neurosurgeon). The best one in Oregon is apparently busy running for senate, but there's a sizeable center for this in Seattle. I will research again if there are any other specialists at OHSU or the other local children's hospital. Like I said, the GP said it was completely normal but that does not sound right to me. The report says "Conus terminates at the L2-L3 level with fatty infiltration of the filum terminale". It also mentioned a fibrous infiltration. Because it's just the radiology report there is not a diagnosis. All of these responses have given me new confidence to push forward on this. Thanks again. (Edited to eliminate redundancy.) Quote Link to comment Share on other sites More sharing options...
Loowit Posted October 30, 2014 Share Posted October 30, 2014 Thanks, all! Wow, I did not expect so many responses! Such a pleasant surprise this morning. Thank you all. We have already sent the MRI cd to a specialist in Ohio (though we live in Oregon). If we don't hear from him within a week or so, I'll see about taking it locally to a neurosurgeon (good catch, Wapiti- I meant neurosurgeon). The best one in Oregon is apparently busy running for senate, but there's a sizeable center for this in Seattle. I will research again if there are any other specialists at OHSU or the other local children's hospital. Her report says the conus terminates between T2 and T3 and there is a fatty infiltration. Like I said, the GP said it was completely normal but that does not sound right to me. The report says "Conus terminates at the L2-L3 level with fatty infiltration of the filum terminale". It also mentioned a fibrous infiltration. Because it's just the radiology report there is not a diagnosis. All of these responses have given me new confidence to push forward on this. Thanks again. My son had his done by the doctor in Oregon that is now running for office. She sent out letters a while back to patients about it. Anyway, I know that there is another doctor in that office that is also supposed to be good, but I don't know the name off hand. DS had his surgery done at Randall Children's Hospital in Portland. We had an excellent experience there and the staff was wonderful. Quote Link to comment Share on other sites More sharing options...
violamama Posted October 30, 2014 Author Share Posted October 30, 2014 Loowit, I am looking at her office webpage right now! She's massively unlikely to win, it being Oregon and her being not-liberal. I'm calling her now. Another friend of a friend also recommended her office. Thank you! Quote Link to comment Share on other sites More sharing options...
wapiti Posted October 30, 2014 Share Posted October 30, 2014 fatty infiltration of the filum terminale FWIW, this description sounds like a filum lipoma (what my ds had). The good news is that it would probably be a relatively simple surgery. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted October 30, 2014 Share Posted October 30, 2014 I just wanted to say to the OP that it may seem scary now but kids' bodies are so resilient. My dd did not have a tethered cord but she had spina bifida occulta and ligament laxity which led to her spine falling apart at age 8. She has surgery to correct and fuse part of her lumbar spine. It was a difficult time but she recovered wonderfully. You are doing the right job by finding the best doctor for her. I wish all of you well. P.S. Ditch your GP. Life is hard enough when you have medical worries. You don't need someone like that in your life. Quote Link to comment Share on other sites More sharing options...
G5052 Posted October 30, 2014 Share Posted October 30, 2014 I just wanted to say to the OP that it may seem scary now but kids' bodies are so resilient. My dd did not have a tethered cord but she had spina bifida occulta and ligament laxity which led to her spine falling apart at age 8. She has surgery to correct and fuse part of her lumbar spine. It was a difficult time but she recovered wonderfully. You are doing the right job by finding the best doctor for her. I wish all of you well. P.S. Ditch your GP. Life is hard enough when you have medical worries. You don't need someone like that in your life. With these complex problems, you have to get to someone who really knows what they're doing IMHO. We see our internist/ped doc for wellness checks and immunizations, and not much else. Anytime you're thinking of surgery, you want someone who does lots and lots of these. I've told this story before, but I took my youngest to the local orthopedic practice for wrist problems. It turns out that she had a ganglion cyst. When we finally saw an M.D. (two visits to his P.A. before that), he said that surgery was absolutely the only solution. When I asked him how many of this he did in a year, he couldn't remember and gave me a number "off the top of his head" that scared me. He also added that he did a fellowship in hand surgery "years ago" but hadn't kept up in that field because he was too busy. It would have required a split for three weeks and probably physical therapy. Needless to say, we couldn't get out of there fast enough. Then we went to a pediatric hand surgeon. He said NOT to do surgery, and recommended a new procedure under local with a different doctor. She might eventually need surgery, but this might do it. He even told me how to make the appointment to make sure that I got that particular doctor at a particular facility that he said had better equipment. Well, she walked out with just a bandaid and a little soreness for a day. No split, and no physical therapy. And no problems so far. Get the right doctor! Quote Link to comment Share on other sites More sharing options...
violamama Posted October 30, 2014 Author Share Posted October 30, 2014 I've had my GP's office fax the neurosurgeon's office- I didn't realize it was as easy as that until I just called them directly to find out what constitutes a referral. The PA there who answered the phone said, "Why not have a neurosurgeon take a look at the MRI and hear from the horse's mouth what exactly is going on?" My sentiments exactly. And yes, we're done with the GP. It's too bad, I liked her in person but it's been a nightmare to get ahold of her or ask questions. Feeling reassured. Quote Link to comment Share on other sites More sharing options...
zimom Posted October 30, 2014 Share Posted October 30, 2014 OP, you have received excellent advice and sounds like you are on the right track. In my prior life BH (before homeschooling), I was involved in a study with a pediatric neurosurgeon involving tethered cords and Arnold chiari malformations. Unfortunately he relocated before we finished the study and I 'retired' shortly after that so I'm not sure what ever became of his study. Quote Link to comment Share on other sites More sharing options...
violamama Posted January 8, 2015 Author Share Posted January 8, 2015 Just thought I would update you guys as I really appreciated your input. We finally had our appt with the pediatric neurosurgeon and we are scheduled for surgery next month. It seems it's a very miild and easily fixed kind of tether. We'll be one night in the hospital and the doc says the surgery itself will take only 30 minutes. Loowit, we're with Dr. W and I loved how clear and patient she was with us. I was very impressed with her and her whole office has been very helpful. We have also found a great pediatrician, recommended by the surgeon's office. Thanks again for sharing your advice and stories. Quote Link to comment Share on other sites More sharing options...
kiwik Posted January 8, 2015 Share Posted January 8, 2015 Sounds hopeful. Quote Link to comment Share on other sites More sharing options...
Slartibartfast Posted January 8, 2015 Share Posted January 8, 2015 OP, you have received excellent advice and sounds like you are on the right track. In my prior life BH (before homeschooling), I was involved in a study with a pediatric neurosurgeon involving tethered cords and Arnold chiari malformations. Unfortunately he relocated before we finished the study and I 'retired' shortly after that so I'm not sure what ever became of his study. Ds has a genetic condition that puts him at risk for Arnold Chiari malformations. It is only something they recently realized, I mean they only recently started including it among other things that occur among those who have the same syndrome as he, I don't really know how that would start to present. I am interested in whatever information you might know about it. If you could pm me so it isn't taking a serious thread for someone else off topic that would be fine. Thanks! Quote Link to comment Share on other sites More sharing options...
zimom Posted January 8, 2015 Share Posted January 8, 2015 sent you a pm Quote Link to comment Share on other sites More sharing options...
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