Cord tethering

[Speedy2056]

I was diagnosed with cord tethering last week. Anybody else have this? Did you have surgery? I have read horror stories of the spinal cord eventually snapping. How likely is this? I hate surgery and would ideally not have it but will if it means that symptoms can put me in great danger.

[selmaS]

No worries : )

I know that once u have a shunt that they can be problematic with the malfunctions.....I have a article in my journals on shunts.

As for the drs not mentioning ur TC, I found an old MRI report that mentioned my TC, I was never told bcuz it was not what they were looking for......it is y we always suggest u ask for copies of all MRI, tests and the reports....we have to advocate for ourselves unfortunately.

I am in a holding pattern for this TC release surgery too!....I think I will wait until symptoms dictate I do something...right now I can manage.

"selma"

[Speedy2056]

Well, I have had many spinal MRI's before because of my CM but the docs never mentioned anything about TC. I'm guessing they didn't mention it for a variety of reasons, such as myself not mentioning symptoms, they are only specifically looking at the spine for fluid cysts caused by the CM, etc. Or maybe it really is just a recent occurrence, but since I have spina bifida, I am highly doubting that it is, since it has been said on a lot of websites that virtually all spina bifida patients have CT.

And, yes you are making sense now, thanks. There has already been confirmation of  nerve damage to my bladder but the docs said it's due to my spina bifida, not CT, but maybe you are right, that a detethering procedure would make it better.

But because I also have hydrocephalus with a shunt in place, it's very risky because the surgery can cause my shunt to malfunction. It can take a few surgeries to get that right. Back in '95' I had to have five surgeries in one year because my shunt kept malfunctioning after a revision.

As I'm writing this, I'm thinking that my decision will be to leave it until symptoms become worse. Perhaps I'll be lucky and they won't, although I doubt that.

I guess time will tell.

Thanks for the help!

[selmaS]

  Sorry, what I am trying or was trying to say is this- depending on how long u r self cathing....if the issue is from the TC and the release helps the bladder issue u may not need to cath, however, u may have some nerve damage depending on how long the issue has been going on......am I making sense?...Sorry, I know what I mean most times, but am not always  that great on writing it out.....

The docs that said u would have to cath the rest of ur life, were they aware of the TC?

   "selma"

[Speedy2056]

Thanks, Selma!

Yes, I have to self cath and I believe the reason for this was because the docs said this was due to the spina bifida. However, it's likely that my cord tethering has always existed and just has not been diagnosed because I asked my mother if she knew about a hairy patch near my spine and she said yes. Apparently, that's a tell tale sign of tethering. I have no idea why I never really experienced symptoms as a child. Strange!

I had a brain wave the other day. I did experience occassional pain in my left hip when I was little but since it had some surgery done to it, I always assumed it was just some after effects. I am now thinking it was due to the tethering. I still get some of that same kind of pain, but it is manageable.

I don't understand when you say this:

".as long as u do not have long lasting effects from this....it depends on how long u had the issue...and since u cath, I would imagine it could be for some time."

The docs have said that I will need to cath for the rest of my life, whatever happens.

[selmaS]

  Hi...I also have TC...and I did not have surgery for it. I did have the PFD surgery for chiari. I was told I would need the TC release at some point, but I did not want another surgery so soon to my other one and they r bot major surgeries.

AS far as the cord snapping, I believe that is only if u r still growing....so a child will have this surgery much faster and often than an adult that is found to have it...
An adult will be offered surgery depending on the symptoms...and if I recall, u r having bladder issues...u have to self cath?...that is a good indication u could see benefits from the surgery....as long as u do not have long lasting effects from this....it depends on how long u had the issue...and since u cath, I would imagine it could be for some time.

U deff need a true chiari dr, they also treat TC and should be able to guide u as to how to proceed.

  "selma"