Occult Tethered Cord and Bottom Pain...Typical??

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Occult Tethered Cord and Bottom Pain...Typical??

Postby pearland1 » Mon May 21, 2007 9:55 am

Have any of you been diagnosed with either tethered cord or occult tethered cord, and have the symptom of persistent bottom pain?
I have a toddler, who is constantly in pain with her bottom (she explains "my hiney hurts" and points to her tailbone area).
We have been diagnosed (as best as possible) with OTC syndrome already...but I just wonder does anyone else experience this pain?
There seems to be nothing I can do for her, except give her tylenol which helps some it seems.
Carseat rides are torture, because she starts hurting, which leads to terrible tantrums (you can imagine the frustration).
(also, she has been diagnosed with Chiari Type 1 malformation since February, also has CCI and Basilar impression).
She has chronic constipation...however this is currently completely resolved. She has been on a laxative regularly.
Can ANYONE relate to this?? I guess I just want to make sure this symptom is bc/ of tethered cord...just to give it a 'reason'.
If so, is there anything you can do to help pain with car rides, or prolonged sitting?
Thank you for your advice/help.
pearland1
 
Posts: 33
Joined: Mon May 21, 2007 9:48 am

Postby donbr » Mon May 21, 2007 10:10 am

Hi I just wanted to say hi and welcome to the board.
I dont have any answers i know there is a section for pediatrics, not sure how often they post or read posts over in this section If you copy/paste your question they might be able to help but keep this one active also.
I hope you can get the answers you deserve
Take care
Don
donbr
 

Postby mac » Mon May 21, 2007 2:10 pm

I have tethered cord and I also have a lot of pain in the tailbone area. Kids are different than adults, but for me, the pain comes with bending over and stretching...or on my knees and trying to pull a few weeds from a flower bed. So, you can imagine how difficult it would be to keep a toddler from being on her hands and knees, to keep her from leaning over. But for me, dx with TC, and also having the same pain in the same area, I can tell you that those activities do cause this deep burning that is quite distinguishable from other back pain I've had.

I really feel for you because as a Mom, we all want our children to be happy and healthy and not be in pain.

I wonder if they make specialized car seats that would allow her to be more recumbent? Maybe you could ask your doctor if that would be good for her, and if those types of seats exist? I truly think it would help, but it's hard to tell b/c when it's hurting, there is no position that really relieves it. But, hey, here's an idea! When she complains in her carseat, perhaps you could put a tiny cushion behind her low low back, which would change the angle a tiny bit that she is sitting in the seat. That might make a big difference and be easy and low impact to find out if it helps. I know for myself, when that burning is there, I have to put something, while sitting in certain chairs, down low behind my back and get the pressure off of it.

The other feelings I have with TC is a feeling behind my knees. Very painful and weak, but also feel like I wish someone would pick me up and hold me, with one arm under my knees. She may feel this sometimes. I don't know.

And there is a sensation in my way lower back as if I have been doing the opposite of arching my back, you know? Know how you might feel if you were tense in your back from trying to stay very erect? Something like that. But I have done none of those things, yet that is how it will feel.

For an adult like me the avoiding of what makes it hurt the most is definitely key to managing the situation. With a child, I just don't know how that is achieved. Maybe Mom's in the peds board would know, I don't know.

Remember, I'm not an expert or a medical professional, just a layperson trying to help.

hugs
mac
mac
 

Postby glacierlily » Mon May 21, 2007 2:32 pm

My NS suspects I have an occult tethered cord, so he asked me to keep a log of all the various aches, pains, and other symptoms I have to see if his suspicion is correct. As it turns out, the one constant pain I have is in my tailbone area... and I stupidly thought all these years that it was from falling down on some ice while cross-country skiing and that I had just screwed up my tailbone. :roll: I never put my tailbone pain together with my lumbar syrinx until I started keeping a log of it. Sheesh. And I never told my NS about it, either (thinking it was 'nothing') but he'll hear about it the next time I go in. Like Mac, mine gets worse with bending over and stretching.

Mac's idea about the cushion is a good one. Or see if you can find the kid's version of one of those little donut cushions they make for people who break their tailbone. I wish I had one!
Syringomyelia, Scoliosis, Raynaud's Syndrome
Tethered cord release surgery - 5/13/08
glacierlily
 
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Postby pearland1 » Mon May 21, 2007 5:22 pm

Thank you all so much for your help.
I get frustrated with the doctors, who always go back to her constipation, psychological effects of it, etc.... I keep telling them this has nothing to do with that and she is having definite pain in her 'hiney'! No one seems to have a reason for it, except our latest doc does think it may be related to occult tethered cord...just no confirmation of that.
I feel like we are currently waiting for a worse symptom to arise, to warrant surgery.
So frustrating as a mom!
Thanks again for your help.
pearland1
 
Posts: 33
Joined: Mon May 21, 2007 9:48 am

Postby mac » Mon May 21, 2007 6:17 pm

Pearl, I was thinking about your post today and thought how valuable it must be for you to be able to ask adults, who can convey their pain and feelings, and who have the same condition as your daughter. I think that was so smart of you to come here and ask your question!

keep us posted.

mac
mac
 


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