horseshadowrider
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Registered: 03-2008
Location: Washington state
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 Charnel's Post on Tethered Cord surgery recovery
Please, no responses to this message on this forum. Please take all questions to "Main Chat" THANKS! And, thanks Charnel.
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In order to answer this question I would like to talk a little bit about anatomy at the bottom of the cord, the detethering surgery, and what happens post-op.
The spinal cord ends in what is called the conus and is attached to the bottom of the pelvic vertebrae (called the sacrum) with the filum terminale. Ideally the filum is loose and elastic. It has to be this way so that as we move the conus and the cord can move as well without tension being created.
When the filum is tight or inelastic two things happen. One the cord cannot move in the way it needs to and the second is that because the spinal cord is being held down the nerves that are a loose grouping after the end of the conus (called cauda equina) are too short due to lack of movement of the cord. The nerves only grow as long as they need to be. So if the conus is being held low or not being allowed to go up with movement the nerves tend to be too short.
These two issues result in what is called ischemia to the nerves (basically meaning lessened blood flow) and mechanical damage from the pulling on the cord. Without proper blood flow the nerves cannot heal themselves from the mechanical damage.
The surgery to detether the cord consists of several steps but the most pertinent to recovery and experiencing future symptoms are the sectioning of the filum terminale and the sectioning of arachnoid adhesions on the spine and/or cauda equina. The filum is cut and depending on if you have or are at risk for EDS the docs may need to also look at the nerves of the cauda equina. After the filum is cut the conus goes up and continues to do so until it is in it's proper place. As the conus rises it causes pressure to the nerve roots of the cauda equina. If your doc has experience in treating Tethered cord with EDS pts he will determine that adequate flow is established and that there are not additional arachnoid adhesions. If adhesions are missed then the csf flow will be slow and when the child grows the tethered cord symptoms will come back and another detethering will likely be needed.
Like decompression the main goal of detethering is to halt the progression of symptoms. However with the right surgeon and if the tethering is caught before permanent damage is done there often is a reversal of symptoms and healing of the nerves at the bottom of the cord and cauda equina. The majority of this healing occurs in the first six months but, healing can continue up to two years post op.
While adults and children have the same surgery the recovery time is different as is the progression of the recovery. The vast majority of pts will wake up from surgery seeing improvement in symptoms. The more severe the symptoms the longer it take for recovery of the nerves and the various symptoms caused by the tethering.
There are two phenomenon that I often discuss with members on the trifecta board that are not usually discussed post op with the medical staff. The first deals with the healing of the adults after surgery. With the abrupt ascension of the conus during surgery the nerves of the cauda equina which are already short from being held still for so long have the added strain of dealing with the new conus height. For some reason this shows up about 10-12 weeks post-op. Pts will see and abrupt worsening of symptoms that will take 2-4 weeks (while the nerves of the cauda equina to stretch and grow into their new position) to get back to the point in their recovery they were at before the flair up. I see this in at least 90% of adult detethering pts I talk to but it is rare with children.
The second phenomenon also deals with stretching the nerves of the cauda equina. Children with tethered cord will often see flair ups in symptoms for a short period of time every time they grow for a couple of years following detethering. This is nothing to worry about unless the symptoms do not go away after a few weeks or get worse with each subsequent growth spurt.
Due to the complex nature of EDS and the likely hood that arachnoid bands may re-occur in certain EDS pts occasionally a second detethering is needed in very young children who still have a lot of growing to do before reaching adulthood. Again this is very rare.
In children and adults alike during the first six months or so while the cauda equina is stretching and growing into it's new length symptoms can and do flair up of there is too much tension put on the cord. Bending, twisting, and contact sports that could result in trauma to the lumbar area should be avoided.
I hope this info can give a better understanding of the issues surrounding the surgery, recovery, and possible of further detethering. FYI the kids and I have all been detethered. While we do occasionally see flare ups when the kids grow we have had resolution of at least 80% of our issues. The rest I believe are related to EDS.
Charnel
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Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.
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4/25/2008, 11:51 am
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