25 year old male with a thethered cord

[Peter Tamayo]

Hello all, I am a 25 year old male with a tethered cord. I was born with a spinal lipoma type thing and I had surgery to repair it at 1 month old. The surgery was very successful and I've led a normal life free of any of the normal problems that a birth defect like that could cause. A few years back I started to have back pain. It was on and off for a few years until about the past year or so it has become constant. Within the past year my left foot has also gone numb. So I had an MRI and it showed that I have a spinal lipoma causing cord tethering, post surgical changes and bulging disks. I've been to 3 neurosurgeons so far and each one told me something different.

The first one said that I had to have the cord untethered or I would end up in a wheelchair eventually.

The second one I went to told me there is about a 50% chance surgery will help with my pain there is a 5% chance that surgery could cause more neurological damage with a 50% chance it will be permanent. He also said that the cord could re-tether after surgery. He is a pediatric neurosurgeon how has a lot of experience with cases like mine.

The third one I've been to told me that I should try physical therapy, stop taking narcotic pain killers and it that doesn't work I should try spinal fusion surgery to strengthen my back. He said cord de-tethering surgery will likely cause more problems and not relive my back pain.

Since then I have tried physical therapy, I do all the stretches and exercises they taught me, I tried a facet block injection which only seems like it caused me more pain. It is getting real bad I am in so much pain all day every day. I've been trying to kill the pain for the past few months with powerful painkillers but they never seem to work. I am going to see another neurosurgeon this Friday. I need help. If anyone has any suggestions on what I should do I would greatly appreciate it

[Hoosier Mama?]

Like you, I lived a relatively normal life in spite of all my spinal anomalies, until a 'necessary' de-tethering when I was 30 y/o. They told me that I'd lose the use of my legs if I didn't have the surgery. But unlike you, I was asymptomatic at the time.

This started the whole cycle of re-tethering...each time I lose a little more function. It's really quite a crap shoot. As you probably already know, the purpose of surgically untethering the cord is not to relieve the symptoms (although sometimes that happens too, if you're lucky), but to stop them from progressing.

Two things I know for sure:

1) A surgically untethered cord will retether....guaranteed.

2) Not all tethered cords warrant surgical intervention.

Loss of bladder or bowel function is usually the benchmark used to determine if surgery is warranted.

I'm glad to know that you've sought out several opinions, and one with a pediatric NS. I wish I had done the same in '87.

I realize I'm not coming across as a big proponent of de-tethering. I'll admit, I have my regrets...I wasn't as informed as I am now.

Having said that, I've read of many accounts where the de-tethering has improved symptoms. And if bowel/bladder functioning is decreasing, there are really no other options. I am looking at the possibility of my third de-tethering in the near future myself, and I am currently having to weigh in on all the risks/benefits to arrive at my decision. I'm seriously thinking of opting out this time, as the last de-tethering left me partially paralyzed.

It's been my experience that there are an ample supply of surgeons who really don't know diddly-squat about tethered cord, but are all too happy to cut around on them....so be very discerning. If you do have the surgery, I suggest going to a teaching hospital for the best care.

If I were you, I'd want to exhaust all the other possible sources for your pain first. I never had debilitating pain with my tethers, only loss of function, but everyone if different. I'd just hate for you to have such a surgery, only later to find out that it was something else causing the pain.

It sounds like you've been very proactive already in trying to find relief. That can get wearisome, I know....but don't give up!

[heidistagg]

Hello,

I am a 29 year old female who just had tethered cord surgery. I had the same problems that you did if you still need please feel free to contact me at heidistagg@bellsouth.net I can give you options that I have and the doctors that are #1 in the world when it comes to this..Good Luck

[daniele3397]

Hello ... my name is .... Daniele
I wrote you a few months ago because in a week have about 'I have my second intervention tethered.
The first I had him at 17 years of ..... I have 32 hours.
I am very worried because 'I read that the risks are much more' of the previous high.

I wanted to ask you if you believe in 'very high possibility of having other retethered future ?....
If you have any information on the timing of recovery from such an intervention ...?
I live in Italy but for the intervention i'll go 'in Lisbon for me to work for some Dott.Reis that to prevent subsequent anchors removes the aracnoide to the scar ...
I have pleasure to have your say about ....
Daniele greetings

[Beate]

Hei

I had my surgery when i was 41.. and they didn'nt know for sure that i had TCS.. but i lost the functions in my legs rather quickly and i got bladder problems.... and a lot of pain.

I felt better for almost a year... and then it started all over agaian... now im on painkillers and i go to my fantastic physiotherapist... she make my legs feel better....

My neurologist do not want to do another surgery... because he thinks it will re-tether again.. so here i am... going around not knowing what to do...

Im glad that i can manage my work as a manager for a helicoptercompany....

Best regards Beate in norway...