United Brachial Plexus Network, Inc.

My 4.5 y/o robpi may have this diagnosis. I think everyone in here should read about it. We have been dealing with my son's stomach and hip flexor muscle weakness as well as bladder leaking issues. He also has acute pain in his legs and/or feet. His left leg has always been worse than the right and has a bit of spasticity in his ankle along with mildly tight heal cords. He has balance issues as well. His specialist recently mentioned the SCIWORA diagnosis.

The spinal cord can be injured w/o any fractures.

Read more here on the diagnosis:

Spinal Cord Injury without Radiographic Abnormality(SCIWORA). SCIWORA is defined as the occurrence of a spinal cord injury despite normal plain radiographic studies. In addition, flexion/extension films of the cervical spine and CT scans are also normal. There are wide differences in the reporting of SCIWORA and its incidence ranges from 5% to 70% of all pediatric spinal cord injuries, depending on the study examined. A true incidence is probably close to 20% of all pediatric spinal cord injuries. SCIWORA occurs almost exclusively among younger children and 2/3 of the cases occur in patients 8 years or younger. SCIWORA is very uncommon in adolescents and rare among adults. Cervical and thoracic spinal levels are injured with almost equal frequency and lumbar levels are rarely involved. There are important differences in SCIWORA injury patterns between younger age groups (0 to 8 years) and older children (9 to 16 years). Younger patients account for 2/3 of all SCIWORA injuries and have a higher proportion of complete neurological injuries. Adolescents show a far less frequent incidence of complete spinal cord injury due to SCIWORA. Upper cervical spine injuries typically involve young children more than adolescents. Due to insufficient data regarding injury patterns, it is difficult to make other general statements regarding the completeness of SCIWORA injuries or injury level. Further experience and information is necessary for this analysis.

SCIWORA is due to the ligamentous flexibility and elasticity of the immature spine. A young child's vertebral column can withstand elongation without evidence of deformity while the spinal cord is injured. The infant spine and cadaver specimens can withstand up to two inches of stretch without disruption. In contrast, the spinal cord ruptures only after 1/4 inch of stretching. This mismatching of elasticity response between the spinal column and spinal cord is the major factor contributing to the high incidence of SCIWORA injuries in young children.

In all cases of suspected SCIWORA injury, an MRI should be performed. It is possible that compressive, treatable lesions may be identified that were not seen on plain films. Examples of such lesions include hematomas or hidden ligamentous instability not shown on other studies. Some authors have reported that a delayed onset of neurological deficits may predispose to a worse outcome. Further data is needed to substantiate this claim.

It is important to understand that once a SCIWORA injury is diagnosed, the child is at increased risk for recurrence of this episode. Recurrent injuries are typically more severe than initial injuries and may have permanent sequelae. Many centers maintain patients in external braces such as a stiff cervical collar for several months in order to prevent further injury. However, strict guidelines regarding treatment of this injury are lacking and there is significant variability between physicians regarding the type of treatment necessary. In general, once a diagnosis of SCIWORA is made, most practitioners are very conservative in their approach and some type of external immobilization is usually necessary for at least one to two months.

Birth Injuries. Spinal cord injury due to birth related trauma is probably under-diagnosed and under-reported. This is most likely due to the lack of radiographic findings seen in most instances. Typically the upper cervical spine or cervicothoracic junction is affected. However, any level of the spinal cord can be involved and involvement in multiple levels is not uncommon. Two thirds of all birth injuries accompany breech presentation and 1/3 occur with cephalic presentation or transverse lie. There have been a wide variety of factors implicated in birth related spinal cord trauma including mechanical repositioning, breech presentation and forceps extraction. The mortality for birth related spinal cord injury is high and survivors may have a poor prognosis. Improved prenatal monitoring and obstetrical techniques have helped reduce these injuries over time.


Here is the direct website address:

http://neurosurgery4kids.net/spinalcord.htm

I thought I would bump this up since there is chat about Gaits. This is a very interesting article that could be the cause of some of the funny gaits. My son defintely has a different or abnormal gait and has accute pain in his legs, feet and hips.

Well low and behold here it is several years later and my son finally gets an official diagnosis other than his ROBPI! He has a tight filum at the bottom of his spinal cord and will need surgery to have it released. His spinal cord is being pulled down 1.5 inches down from where it should be. He has had such pain and suffering over the years and so many doctor appointments trying to get it diagnosed. So many doctors gave me the lecture that I might need to accept my son the way he is ...blah, blah, blah, pointing out that all of his lower body symptoms might be from his birth injury.

It wasn't until about a year ago that the medical doctors started to take me seriously and began testing as his symptoms were getting so bad. This cannot be diagnosed by an MRI read by a radioligist!!! It must be read by a neurosurgeon. I look forward for this surgery to be over with! He also may need foot surgery to correct his feet but at least we now know that his poor feet won't continue to grow deformed.

Susie - I'm sad that your son has been through so much but so glad that you finally have a diagnosis and a means of getting him some help for his situation. Thank you also for pulling up your old post because I don't remember seeing it a few years ago and my daughter had had multiple issues including severe leg pain over the last 3 years and no one has been able to treat or help her with the leg pain when it hits her so now I have something to research more for her. Best of luck for your son for his surgery - I hope all goes well. Please update us ok?
francine

Hi Francine, thanks for responding. I felt a little dumb posting as I know it is off topic but felt that some of the other kids in here have showed simular symptoms, plus the fact that I was the only one discussing it...lol

Does your daughter happen to have a birthmark on her back or near the bottom of her spinal cord?? My son has one that the pediatrician shrugged off as being nothing. It was something!! It is called a sacreal dimple (something like that.) It has everything to do with the reason for all of his issues other than the erbs palsy. I think the erb's palsy diagnosis made them blame all of his symptoms on that. Surpisingly, he had a normal MRI in 2005 and in 2009. The radiologist doesn't always catch it. You have to have a neurosurgeon look at the actual films. Feel free to email me if you have more questions. koyfam@att.net

I will have to look... it's been a while - she's 11 now

Francine - some of the other things we ruled out was HSP muscle Disease, Muscular Dystropy, and nerve diseases. How is your daughter's gait? How are her feet development? high or low arches? Is she a toe walker? How does she describe her leg pains? What part of her legs are hurting? I have had aching legs all my life and my daughter has them too. My holistic doc swears it is from dehydration, so make sure your daugter is hydrated!! That is an easy fix... =)