Despite obvious symptoms of tethered cord since birth, and years of seeing many MDs, including neurologists and orthopedists, and all types of other specialists, I was only diagnosed with tethered cord at L1 and lipomas at L2-L4 at age 58. How rare is this condition that specialists would overlook my obvious symptoms for 58 years? How did this happen?
Person's Gender: Female
Person's Age: 59
After numbness, multiple falls and bladder incontinence, I was sent to MRI by my regular neurologist and my condition was severe enough that I was advised not to wait at all for surgery, which was done at a major teaching hospital in Houston. I am thankful, but am puzzled why this condition was overlooked for 58 years.
This is Dr Sathya and I am very glad to help you with your question.
First I will send couple of articles on the incidence & prevalence of tethered cord syndrome (with or without lipoma)
Take your time and go through these articles.
As you see the incidence & preevalence is low but that is not excuse for your clinic drs to have missed it.
You had symptoms clearly pointing towards the lower spine/lumbosacral area so why MRI was delayed for such a long time is really difficult to understand.
While your condition is considered rare but with your type of symptoms (leg numbness, falls, bladder symptoms) they were supposed to suspect lumbosacral spine pathology, whether it is tethered cord with lipoma or other possibilities and MRI was due for very long time and it would have easily picked your condition.
You in fact had symptoms since birth itself. In very young kids (say up to couple of years) they use ultrasound for this diagnosis. And ultrasound was available when you were that young. Later CT became available too which could have also identified your condition. MRI became available bit later but it is available since around 1980s regularly so when it became available they should have ordered it.
You had symptoms suggestive of this condition and even if its incidence is low the Ultrasound (at early age) and later CT or preferably MRI (when became available) was supposed to have been ordered to identify the exact cause of your symptoms, but it is really strange that in your case such investigations were not immediately employed to give you the exact diagnosis. If these investigations were used immediately after you presented to the drs with your symptoms then you would have had the final diagnosis made very long ago.
Glad to see that the diagnosis was finally made and you also have undergone appropriate surgical treatment to get it fixed, and hopefully things will all go fine from here onwards!
If you have any additional questions do not hesitate to ask me; and if you feel you have received the information you are looking for and feel satisfied with my answer click on the smiley face to compensate me for the time and effort put by me in answering your question.
Dr. Sathya's answer is not visible to me now. He gave me two links to read and now that part of the response is gone.
Okay in that case I will switch this to Quention & Answer format, okay, wait I will do it now, hope you can see it then.
American Board Certified Neurologist, Internal Medicine
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Hope you could see it now, if not let me know.