Sorry to hear about your daughter. The problems with spinal cord development most, if not all have an abnormal conus and filum terminale. The lipoma is likely part of the syndrome, because it is also due to abnormal spinal cord development. The abnormal filum is the same as a tethered cord as the cord becomes "tethered" due to the abnormal growth of the spinal cord. Whether surgery is needed is in part what the symptoms of your daughter and the MRI shows to be the extent of the lesion. Most surgeons like to wait for the child to grow alittle before surgery, but it is individual. I am sorry but I do not know anyone at OU. I would imagine that they are very good, but always seek a second opinion about types of surgery. It will give a feel about another opinion and what to expect. I hope things work out well with your daughter.
CCF Neuro MD
we just found out that katelynn will have to have surgery to release the cord. we have to have a mri of her cervical and thoraxic spine are there any other defects that could accure due to the tethering? and he ordered urodynamic studies what do they intell? any info from any one is appreciated thank you.
Joanna - We went through a lot of the same things you are going through right now, but our daughter is 12. Found out she had congential scoliosis at 7 due to hemivertabrae. At that time they also did kidney ultrasounds on Marissa as we were told with cogential anomolies in the spinal area can also mean cogential anomolies in other areas where the vertabraes were missing. She never had problems with kidney or bladder infections. Her kidneys were fine. At that time were were advised that some cogential scoliosis patients never have progression of the curvature, but as she continued to grow her spine continued to curve. The first part of this year she had x-ray that revealed 15 degress progression in one year and her curve was up to 51 degrees which would require surgery for the curvature. MRI showed she also had lipoma at the bottom of her spine, but did not feel spinal cord was tethered as she has no neuro problems involving the bladder or bowels. She underwent spinal fusion without instrumentation in June and is doing really well. Did your doctor mention anything about the scoliosis at this time or are they just going to deal with the TSC. Best of luck to you and your daughter.
i know well what you are talking aobut ourlittle girl is 31mo know she is at a 27-28 degree curve already. she does have a small right kidney with either scarring from reflex or normal variations due to fetal development. how bad was you litle girls curve when they found it? at this time no has said anything about correcting her scoliosis although i wished they would so her fun can stop. did your little gorl have any urodynamic studies? we hope ll of katies are normal but we just dont know well thank it is nice to actually fid other parents with kids simulare to katie her in oklahoma there really are no links for families such as ours :)
The only test was ultrasound to see if her kidney's were normal in size, no scarring etc. so no further testing was done. Marissa's curvature was 18 degrees when she was 7. Like I talked before, they continued to monitor it because sometimes they can get through all of their growth without the scoliosis going past 40 degrees (which is usually the cutoff for surgery) and with cogential scoliosis, once they are done growing the curvature stops. I found a lot of information on the internet under cogential scoliosis, tethered spinal cord and lipomas. If you would like to send me your e-mail address, we could talk further and maybe help you locate further information.
ya that would be fine.***@**** is mine but i dont know how to send it to you directually. it would be nice to talk and see how it progressed and all the fun stuff i f any other person has simulare kids please fill free to write thanks.