Thread: Teathered Cord
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Old 10-22-2004, 11:05 AM   #10
Senior Veteran
Join Date: Jan 2003
Location: Indiana
Posts: 708
franjo HB User
Arrow Re: Teathered Cord

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.

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.

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.

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 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 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' 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....

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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