Hi...I am so sorry ur DS is having to go thru these surgeries....
I know that a TC release can re tether and need to be redone sometime in the future...I know u need a specialist that does this type of surgery on a daily basis.
All surgery have risks...this is the spinal cord.....and will be painful.....
Release Surgery
Tethered cord release surgery has risks, including permanent neurological changes such as:
loss of sensation and further lower extremity weakness,
change in gait, and
occasionally irreversible loss of the ability to ambulate.
Therefore, most neurosurgeons try conservative treatment first. This includes rest, anti-inflammatory medications, and rehabilitation therapy. If the neurosurgeon believes this is a symptomatic tethered cord, it is also important to evaluate the shunt before considering an untethering procedure, because tethered cord symptoms can result from shunt problems.
Because the backs of adults are thicker than children, the surgery is somewhat more involved in adults. The recovery is similar in that there is a period of immobility where the patient must remain flat, followed by a gradual increase in activity. The exact timing of the recovery is patient and surgeon dependent. The individual undergoing surgery should also be aware that during the healing process the cord will likely tether again, which may or may not result in a return of symptoms.
Hi...just wanted to give you a glimmer of hope here! I am 41 years old with spina bifida/tethered cord/lipoma. Unfortunately, when I was a child, medical technology was not as advanced as it is now and did not have my first surgery until 14. I have some sensation loss in my left foot with bladder retention which unfortunately is permenant. Not such a big deal. I was active in sports and currently a registered nurse. I also was able to conceive a beautiful baby boy who is now eleven!
If you need a pediatric Neurosurgeon I highly recommend to you, Dr P. Narayan @ St. Christopher's Childrens Hospital in Philadelphia, PA.
All my prayers and well wishes to you...hope this is not sent to you too late.
Remember...early intervention is key!
Also as far as I know there is NO conservative treatment for tethered cord that I am aware of...just symptom management.