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    Old 10-15-2004, 03:11 PM   #1
    bwillett
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    Question Teathered Cord

    I just found out that my 5 year old son has a teathered cord. Can anyone help me better understand what that is and what the surgical procedure is like? Thank you in advance.

     
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    Old 10-21-2004, 07:51 AM   #2
    geoffw
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    Re: Teathered Cord

    Quote:
    Originally Posted by bwillett
    I just found out that my 5 year old son has a teathered cord. Can anyone help me better understand what that is and what the surgical procedure is like? Thank you in advance.

    I don't know about helping u but we r waiting for my son's MRI for the Tethered Cord. He is also 5. He also has Sacral Agenesis. Maybe u can help me?? What kind of signs did your son show, things like that..........It would be greatly appreciated.

     
    Old 10-21-2004, 02:38 PM   #3
    bwillett
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    Re: Teathered Cord

    Hi Geoff. I hate to hear that about your son and I am not sure that I will be much help. Michael really didn't show any signs of having this...he was born with hip dysplasia and has already been through several surgeries. We have recently moved and were going for a yearly check-up. Well, the dr. we went to wanted to have a MRI done, because he was curious about this, and when the results came back, he confirmed it. We are set to see a specialist in November for his spine and he also has to go for an ultrasound because they found something wrong with his kidneys too. I am sorry if that didn't help, but it is nice to have someone to talk to that it going through the same thing. Hope things go OK for you and your family. Brandie

     
    Old 10-21-2004, 02:41 PM   #4
    bwillett
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    Re: Teathered Cord

    Hi Geoff. I hate to hear that about your son and I am not sure that I will be much help. Michael really didn't show any signs of having this...he was born with hip dysplasia and has already been through several surgeries. We have recently moved and were going for a yearly check-up. Well, the dr. we went to wanted to have a MRI done, because he was curious about this, and when the results came back, he confirmed it. We are set to see a specialist in November for his spine and he also has to go for an ultrasound because they found something wrong with his kidneys too. I am sorry if that didn't help, but it is nice to have someone to talk to that it going through the same thing. Hope things go OK for you and your family. Brandie

     
    Old 10-21-2004, 02:47 PM   #5
    dennisgb
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    Re: Teathered Cord

    Hi,

    I am so sorry for your little ones. There is a lot of info on this on the web if you type in Tethered Cord (no "a") in your search engine.

     
    Old 10-21-2004, 03:14 PM   #6
    bwillett
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    Re: Teathered Cord

    Thank you!

     
    Old 10-21-2004, 03:38 PM   #7
    franjo
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    Re: Tethered Cord

    Hi Bwillett

    I have had two tethered cord releases...the first when I was 29 and the second one last year. I'd be happy to answer any questions you might have if I can.

    One thing I want to say right now is that not all tethered cords require surgery. This is important to know, because not all neuro Drs. are conversant in this area. You will often find, unfortunately, that YOU are the expert in this area, not the Drs. in most cases. Be sure and find a Neuro who specifically deals with these conditions.

    Symptoms that usually necessitate surgical intervention are loss of bladder or bowel function and increasing weakness/function loss in foot/leg(s).

    Also, if a surgical release of the cord is performed, the surgery itself creates an environment that encourages new scar growth, which will usually lead to another tether down the road. Another good piece of info: A surgically released cord will always show as a re-tether on an MRI, even when it is not re-tethered, due to the resulting scar formation. Additional imaging may be required to definitively assertain a re-tether.

    I hope I've been of some help....remember: knowledge is power.

    :heart: Teri
    __________________
    Spina-bifida occulta; Congenital Scoliosis (dextrorotatory and 'S' curve, 42 thorasic and 57 degrees lumbar); Meningomyelocele (split cord @ L1); Diastematomyelia (re-sectioned at L2-3); tethered cord @ S-3; cysts on cord; various developmental abnormalities of the spine: narrowing of all disk spaces, defects in posterior arches, ectasia of the spinal canal and dura, segmental disease, sclerosis in L. iliac bone and adjacent sacroiliac joint, unilateral osteitis condensans ilium, hypertrophic facet disease L4-5 and L5-S1.

    Surgeries include, but not limited to:
    Lumbar fusion-1968
    Fusion with Herrington Rod instrumentation-1970
    Femoral osteotomy-1971
    Tethered cord release-1987
    Rod removal-1987
    Chiari-type pelvic osteotomy-1988
    Trochanteric osteotomy-1989
    Tethered cord release-2003
    Fusion with instrumentation with lots and lots of screws-2003

    Last edited by franjo; 10-21-2004 at 03:40 PM.

     
    Old 10-21-2004, 05:32 PM   #8
    bwillett
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    Re: Tethered Cord

    Hi Teri! Thank you for the information. I have a few questions for you, if you don't mind. First, Michael (my son) was born with hip dysplasia and has already had his hip almost totally reconstructed. He was also born without a knee cap or a quadricep muscle and the tendon in his thigh was too short. (He had a 'z' cut put in his tendon to lengthen it.) They weren't too sure that he would walk, however, he is a fighter and I can barely catch him. He does walk with a slight limp because he can't bend his knee completely. I was wondering, since you said that scar tissue could be confused with a tethered cord, if it may be possible that what they are seeing is scar tissue?

    We are taking him to a neuro. surgeon at Children's Hospital in Atlanta (in Nov.)and I have heard wonderful things about him. Are there any questions, since you have been through this, that you can think of that I should be prepared to ask the dr.? I have so many thoughts going through my head right now, it is sometimes hard to get it all together.

    How long did it take you to recover from the surgery and did you have to do any physical therapy? Michael went through 2 years of therapy and was not too excited about it, but if that is what it takes, he'll just have to get used to it again!

    Honestly, if you had a 5 year-old child, how would you feel about him/her having to go through this? I know that any surgery having to do with the spinal cord is serious, but how worried should I be about this condition? I don't want to make the wrong decision and not have it done and him end-up with severe damage later-on down the road.

    Thank you so much for sharing with me. It really does help to talk to someone who has already been through this. My husband and I have been through so much with Michael already and I don't know what to think some times. Michael is so strong and has such a great personality and that helps. If only I was as strong!

    Thanks again, Brandie

     
    Old 10-22-2004, 06:33 AM   #9
    dennisgb
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    Re: Teathered Cord

    Brandie,

    It's really hard to have a little one go through these things, as you feel so helpless. My grandson who is 5 has a blood disorder, and they had to remove his spleen a month before my neck surgery. It was real scary. Nothing like what you and your husband are dealing with, but it still is so hard to see them suffer.

    I hope your little boy gets the best help available and he does well.

    Dennis

     
    Old 10-22-2004, 11:05 AM   #10
    franjo
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    Arrow Re: Teathered Cord

    Quote:
    since you said that scar tissue could be confused with a tethered cord, if it may be possible that what they are seeing is scar tissue?
    It's just my guess, but I doubt that scar tissue generated from his hip surgeries would invade the spinal canal to the extent that it would show as a tethered cord. Usually a tether will result from either a previous spinal surgery, a spinal injury, or as in my case, a neural tube birth defect.

    Quote:
    Are there any questions, since you have been through this, that you can think of that I should be prepared to ask the dr.?
    I would want to know how many tethered cord cases s/he has had direct surgical involvement with, what is his/her opinion of what initially caused the tether, and are your son's symptoms indicative of a need for surgical correction? If not, then what signs should you be alert to. Also ask what you can expect 10-15 yrs. down the road after a surgical untethering, if surgery is recommended, and even if it's not.

    I actually had a NS tell me that tethered cords do not re-tether...HA! When and if you hear something like that from a NS, run, do not walk, as fast as your legs will carry you. It's almost a given that a surgically untethered cord will re-tether, usually in a cycle of 15-20 years, although some have re-tethered much sooner than that, even the next year following the surgery.

    And most importantly, always, always, always get a 2nd or even a 3rd opinon. It's too important not to.

    Quote:
    How long did it take you to recover from the surgery and did you have to do any physical therapy?
    After my untether in '87 I did not have to have PT at all. In fact, I was back to work in a factory within three months time, if I remember right. I did develop a neurogenic bladder following this surgery, however. Basically that means that I could not empty my bladder...the muscles in the urethra seize up, so to speak, and will not allow the bladder to empty. I now use an intermittant catheter, not the big, long things with the bag attached (indwelling), but a single-use kind that is no bigger than the ink cartridge of a pen. This symptom diminished over time (about a year or so), but returned as a permanent condition following two subsequent hip surgeries.

    The untether in '03, however, left me paralyzed in my right leg. Please don't let this scare you unduly, because as you can see from my signature below, I have multiple spine/cord problems and there were some extenuating circumstances involved in my case. They suspect that I had a spinal cord stroke shortly after I came to in the recovery room, as they were able to elicit movement one hour after my surgery, but nothing after that.

    So I have undergone extensive PT for well over one year now...not so much having to do with the untethering itself, but the resulting paralysis.

    Of course, with any surgery directly involving the cord, there is always a risk of paralysis or of symptoms worsening, but from what I've read and understand, most results leave the patient with no worsening, and sometimes even some improvements. Any post-op improvements will generally be associated with motor function of the extremities, less common are post-op improvements in pre-surgery bowel/bladder deficits.

    Quote:
    Honestly, if you had a 5 year-old child, how would you feel about him/her having to go through this?
    Well, I do have a son who will be five next month. I thank God that he is healthy in every way, but if he weren't, I'm sure I would be concerned if he had a tethered cord. I cannot imagine what feelings and thoughts must be swimming through your head right now. But I believe your son's youth is in his favor. I had my tether from birth, most likely, yet it wasn't diagnosed until I was 28 yrs. old. I think with the more advanced imaging techniques, more people are being diagnosed with tethered cord than before, many of who may never have even been aware of their condition.

    If left untreated, and depending on the severity of the tether, he may not suffer any additional ill effects. Or you will see a gradual increase of deficits, sometimes marked by periods of rapid loss. When treated quickly, deficits have a better chance of being restored post-op.

    I have to say that in retrospect, I regret having had the first tether release. And I'm certain that the second one would never have been necessary if not for that first release in '87. I was not having any symptoms, and like I said, I was gainfully employed when I went in just for a check-up, since I hadn't had anyone monitor my spine since I left Shriner's in '76, and thought I should at least get someone to have a 'look-see'.

    I didn't know enough then to question the NS and make an informed decision. But now I know that the surgery was not necessary....I believe they based their decision on the weak motor function I had in my right foot/leg, thinking it was a recent development, although I've always had some atrophy in that leg since birth. Not having my prior childhood records was against me in this instance. I had this 'blind-faith' in Drs., instilled in me from an early age, as most of my childhood surgeries were successful and resulted in immediate improvements. I know better now. The rule should be: if it ain't broke, don't fix it.

    Speaking of which....please adamantly request all records, reports as well as films, be copied and sent home with YOU. That used to be a harder task to accomplish than it is now. My NS insists that I bring all records home, saying that it's been his experience that patients keep much better track of their own records than the hospitals, etc. And, with lifelong conditions, records and fillms are often expunged after so many years, leaving the patient with no information to offer a new NS for comparison. I have to believe that had I had my childhood records, the '87 surgery would have never taken place.

    If he demonstrates increasing symptoms of cord tether...then definitely seek surgical intervention...you have to at least stop the progression in its tracks, even if it means another untethering down the road, because the alternative is even less appealing.

    Well I hope I've answered your questions adequately, and I hope I didn't scare you anymore than what you already are. I just really want you to be informed as much as possible so you can rest assured that you did all you could to ensure the most favorable outcome for your son.

    You are his best and finest advocate...no one will be as diligent and attentive as you are concerning his tether. And you also have the mother instincts on your side....something that a whole roomful of film and reports cannot compare....I wish you and your son the very best and will keep you both in earnest prayer. It sounds like he's a strong and resilient little guy (I'm a bit 'onery' myself...in the good sense of the word ). That will serve him well, and with you in his corner, I'm sure he'll be just fine and receive the best possible care.

    Please keep us informed....

    ~Teri
    __________________
    Spina-bifida occulta; Congenital Scoliosis (dextrorotatory and 'S' curve, 42 thorasic and 57 degrees lumbar); Meningomyelocele (split cord @ L1); Diastematomyelia (re-sectioned at L2-3); tethered cord @ S-3; cysts on cord; various developmental abnormalities of the spine: narrowing of all disk spaces, defects in posterior arches, ectasia of the spinal canal and dura, segmental disease, sclerosis in L. iliac bone and adjacent sacroiliac joint, unilateral osteitis condensans ilium, hypertrophic facet disease L4-5 and L5-S1.

    Surgeries include, but not limited to:
    Lumbar fusion-1968
    Fusion with Herrington Rod instrumentation-1970
    Femoral osteotomy-1971
    Tethered cord release-1987
    Rod removal-1987
    Chiari-type pelvic osteotomy-1988
    Trochanteric osteotomy-1989
    Tethered cord release-2003
    Fusion with instrumentation with lots and lots of screws-2003

    Last edited by franjo; 10-22-2004 at 11:09 AM.

     
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    Old 10-22-2004, 01:07 PM   #11
    franjo
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    Re: Tethered Cord

    ACH! Well, I knew I couldn't just shut up......I've thought of a couple of other things to pass along.

    First, watch carefully what the Neurologists and/or NS's do in the office, as far as testing, etc. You don't necessarily need to know how to draw medical conclusions from these simple tests, but you can perform them yourself at home occasionally, and what will help is being alert to any changes in your son's responses.

    For example, one common test is for the Babinski response, where they take an object and firmly scrape it from heel to toe along the bottom of the foot. A normal response is for the toes to curl downward....if the toes curl upward, this indicates a nerve compromise....(I've had this latter response all my life)....but if the toes, say, start to show NO response, after they have usually shown a Bibinski/upgoing, then that would be a change that his NS should be aware of. Or, if he has a normal response (downgoing), then goes to showing a Bibinski/upgoing, this would be something they should know too.

    The main thing is to get a baseline of his sensate abilities, reflexes, etc. and monitor any changes. Ask his NS what things you can look for that might necessitate a re-evaluation.

    Secondly, help your son develop an effective vocabulary to describe any sensations he may have. He wouldn't necessarily have to know the long medical terms, as much as that the both of you can agree on what his vocabulary reflects.

    For as long as I can remember, I've had what I called 'tickles' as a child. No one knew what I was talking about, and of course, neither did I! Now I know that what I was experiencing is called 'Lhermitte's Sign', a nerve-related anomaly.

    Sometimes children won't see the necessity of telling an adult about some odd feeling or sensation, especially when they are used to having stuff like that happen....they may think that everybody has them...I know that I did.

    Anyway, make sure he knows that he needs to tell you when it feels funny or different when he goes to the bathroom...look for chronic bladder infections, etc. Or if his feet/legs tingle, tickle, or prickle. Watch for 'foot drop' when he walks....you mentioned that his tendon was once too tight or short, so mainly you'd be looking for any changes to his normal gait, etc.

    Okay, I'm done now....I promise....

    ~Teri

    Last edited by franjo; 10-22-2004 at 04:02 PM.

     
    Old 10-22-2004, 02:10 PM   #12
    bwillett
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    Re: Teathered Cord

    Thanks Teri! You were a great help and if I can think of anything else, I will probably call on you again. I will also keep you informed about his progress. Thank you so much - Brandie

     
    Old 10-25-2004, 11:41 AM   #13
    geoffw
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    Re: Teathered Cord

    Quote:
    Originally Posted by bwillett
    Hi Geoff. I hate to hear that about your son and I am not sure that I will be much help. Michael really didn't show any signs of having this...he was born with hip dysplasia and has already been through several surgeries. We have recently moved and were going for a yearly check-up. Well, the dr. we went to wanted to have a MRI done, because he was curious about this, and when the results came back, he confirmed it. We are set to see a specialist in November for his spine and he also has to go for an ultrasound because they found something wrong with his kidneys too. I am sorry if that didn't help, but it is nice to have someone to talk to that it going through the same thing. Hope things go OK for you and your family. Brandie
    I'm not sure how safe these boards r but maybe we can talk or u can talk to my wife or something like that. I'm not that good with these things and I actually lost the board for awhile, if u know how and want to let me know. We live in N.Y.

     
    Old 11-05-2004, 02:04 PM   #14
    bwillett
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    Re: Teathered Cord

    Hi Geoff [ removed ] My son is set to have surgery on Nov. 30 for his tethered cord. Have you found anything out about your son? Hope everything is going well, Brandie

    Last edited by moderator2; 11-05-2004 at 02:34 PM. Reason: please carefully review the posting rules - no emails

     
    Old 04-02-2005, 10:17 AM   #15
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    Re: Teathered Cord

    Quote:
    Originally Posted by bwillett
    I just found out that my 5 year old son has a teathered cord. Can anyone help me better understand what that is and what the surgical procedure is like? Thank you in advance.
    Sorry to hear about your son but do not dispair. I am 63 and was born with a teathered spinal cord (Spinabifida). Had first surgery at 5 months old. Had second surgery in 1988.

    It simply means that the spinal cord is "stuck" by a lipoma (non malignant tumor). By removing the lipoma the spinal cord will be freed. If he did not have the lipoma removed he would eventually suffer from nerve damage to his spinal cord. I have numbness in my right leg but other than than I function normally.

    Good luck and please keep us posted!

     
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