Tethered Cord Release - Right Timing

[cavallino]

Hi Everyone!

I recently joined this site as my son was diagnosed with a tethered cord soon after his birth last year at 4 weeks. It's been a very challenging and helpless 10 months since as I want to do all I can to ensure he has the best chance for a full and uninhibited life. In almost all of the research I have read untethering surgery is advocated at diagnosis regardless of age. However, our current Neurosurgeon, who is genuinely considered one of the best in the world, is taking a conservative approach wishing to wait until at least 12 months.

The BIG question is... should we wait or act?

He was diagnosed at 4 weeks with a very mild occurrence of spina bifida occulta at S2, tethered cord (fatty filum) with low lying conus at L5 and has only one kidney. The only external marker was a tiny, and I really mean tiny, pimple like marker just above his **** - I guess almost below the coccyx. Three doctors thought it was nothing and would clear up but the forth suggested an ultra-sound just to be sure. Lucky we persisted!

He has recently shown potential signs of bladder involvement as his latest ultrasound (06/09) indicated the ureter was dilated and not draining possibly due to back pressure. His ultrasound (08/08) showed no signs of dilation and however the following ultrasound (12/08) showed a dilated ureter and nothing was mentioned at the time. After his latest ultrasound he also had a Cystogram to check if this dilation was caused by reflux which was not apparent during the test. In fact he fully voided his bladder twice during the test. He is now scheduled for a MAG3 to see how his kidney is behaving. It is my understanding that to have seen fluid in and dilation of the ureter there is a fair chance of back pressure from a high pressure bladder. Given the changes I am concerned he his starting to show the first signs of neurological deterioration and the conservative approach to not rush into untethereing surgery may result in long term damage.

This appears to be the first and only potential symptom we have noticed. He has regular bowel movements like clock work with only one constipation episode in 10 months. His mobility is unhindered and he is tracking well with his developmental milestones for crawling, standing, cruising etc.

The current strategy is to have another MRI in 4 weeks and then determine the appropriate course of action in regards to surgery. Until then the bladder function will be monitored closely without medication, CIC or diversion surgery to relieve bladder / kidney pressure. Hopefully any loss in bladder function will be restored with the surgery.

Once again... the BIG question is... should we wait or act?

What if the recommendation is to continue to wait and see?

I am not a neurosurgeon but I have read so much case literature over the past few months I just can't understand the justification to wait. I would love to hear the thoughts and experiences of other forum members.

[Sree]

Originally Posted by cavallino

Hi Everyone!

I recently joined this site as my son was diagnosed with a tethered cord soon after his birth last year at 4 weeks. It's been a very challenging and helpless 10 months since as I want to do all I can to ensure he has the best chance for a full and uninhibited life. In almost all of the research I have read untethering surgery is advocated at diagnosis regardless of age. However, our current Neurosurgeon, who is genuinely considered one of the best in the world, is taking a conservative approach wishing to wait until at least 12 months.

The BIG question is... should we wait or act?

He was diagnosed at 4 weeks with a very mild occurrence of spina bifida occulta at S2, tethered cord (fatty filum) with low lying conus at L5 and has only one kidney. The only external marker was a tiny, and I really mean tiny, pimple like marker just above his **** - I guess almost below the coccyx. Three doctors thought it was nothing and would clear up but the forth suggested an ultra-sound just to be sure. Lucky we persisted!

He has recently shown potential signs of bladder involvement as his latest ultrasound (06/09) indicated the ureter was dilated and not draining possibly due to back pressure. His ultrasound (08/08) showed no signs of dilation and however the following ultrasound (12/08) showed a dilated ureter and nothing was mentioned at the time. After his latest ultrasound he also had a Cystogram to check if this dilation was caused by reflux which was not apparent during the test. In fact he fully voided his bladder twice during the test. He is now scheduled for a MAG3 to see how his kidney is behaving. It is my understanding that to have seen fluid in and dilation of the ureter there is a fair chance of back pressure from a high pressure bladder. Given the changes I am concerned he his starting to show the first signs of neurological deterioration and the conservative approach to not rush into untethereing surgery may result in long term damage.

This appears to be the first and only potential symptom we have noticed. He has regular bowel movements like clock work with only one constipation episode in 10 months. His mobility is unhindered and he is tracking well with his developmental milestones for crawling, standing, cruising etc.

The current strategy is to have another MRI in 4 weeks and then determine the appropriate course of action in regards to surgery. Until then the bladder function will be monitored closely without medication, CIC or diversion surgery to relieve bladder / kidney pressure. Hopefully any loss in bladder function will be restored with the surgery.

Once again... the BIG question is... should we wait or act?

What if the recommendation is to continue to wait and see?

I am not a neurosurgeon but I have read so much case literature over the past few months I just can't understand the justification to wait. I would love to hear the thoughts and experiences of other forum members.

Hi all!

My son who is 6 months old now has been diagnosed with tethered cord. Surprisingly, an MRI done when he was 20 days old mentioned just spina bifida occulta with a tethered cord, but an MRI done recently says "cord regression syndrome" also. He is a perfectly normal baby now. Does anyone have a similar experience?

[Sree]

[quote=Sree;783911]Hi all!

My son who is 6 months old now has been diagnosed with tethered cord. Surprisingly, an MRI done when he was 20 days old mentioned just spina bifida occulta with a tethered cord, but an MRI done recently says "cord regression syndrome" also. He is a perfectly normal baby now. Does anyone have a similar experience? The neurosurgeon has advised surgery, though he feels it is not something that has to be done on an urgent basis. We are in two minds on whether to have surgery now since he is, as I said, perfectly normal, by God's grace. Has anyone faced a similar predicament?