Conus Sitting Low

My almost five year old daughter has had problems with urinary incontinence (including strong bladder spasms) for several years.  A recent MRI also revealed that she had a moderate to large amount of stool back-up.  Until that time, we did not realize that she had a problem with constipation.  She has been seen by a pediatric urologist and has been on ditropan (which did not help), cardura (which did help some) and detrol (which has helped quite a bit).  She is also on myralax to help with the constipation.  She had a urodynamics test done two months ago.  Her bladder capacity was 90 cc's before it started to contract and cause her a lot of pain. She also did not completely empty her bladder during the test.

Her MRI was first read as "normal" (except for the stool back-up) by a regular radiologist.  Our urologist, however, wanted a second opinion (after the urodynamics test) and had it reviewed by a pediatric neurosurgeon. The neurosurgeon said that her conus was too low and now he wants to see my daughter.  We scheduled the appointment, but have another week to wait until the appointment (we have already waited for nearly two weeks!).  From the research I have done, it sounds as though she may have a tethered cord.  She has also complained for several years about her "legs being tired" after a long day.  Even a few weeks ago (after her ballet recital) she said that her legs were going to sleep. I do not know if this is a symptom or just a "four year old little girl thing".

I am trying to find as much information I can BEFORE our appointment so I will know what questions to ask.  Does it sound as though she may have a tethered cord?  Could these symptoms be indicative of another disorder?  How exactly is a tethered cord diagnosed?  Is surgery the best option?

I understand that you can't tell us what to do -- I am just hoping for a little more information!

Thanks so much!
Connie

[CCF Neuro[P] MD, RPS]

Dear Connie:

Constipation is a common problem.  There can be many reasons for finding it in a child from atopic anus to never knowing why.  Without examining your daughter, it is difficult to rule etiologies in and out.  Am I assuming correctly that all motor developmental milestones were met on time (walking, running, etc)?  There is no indication that she has pain in her back or legs, scoliosis, high arched feet or leg assymmetry?  There is no scaral dimple, hairy tuft, lipoma, or hemangioma over the sacrum or in the area on MRI.  A tetered cord is shown on the MRI of the lumbar region.  It is a thickening of the cord usually with an abnormally low conus.  It can cause bowel and bladder problems (constipation and urinary retention or frequency).  I would see if you can get a neuroradiologist to review the films also, at least you will know that there is not a secondary gain from the diagnosis.

Sincerely,

CCF Neuro MD