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

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

Postby pearland1 » Mon May 21, 2007 10:24 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.
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pain

Postby Sara » Tue May 22, 2007 9:55 am

My daughter is post surgical for occult tethered cord. She also used to complain of bottom pain/leg pain. Immipramine worked well on this type of pain.
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Postby pearland1 » Wed May 30, 2007 2:53 pm

Thanks so much...

Can anyone else say that they have been diagnosed with "occult tethered cord", and have a symptom of tailbone/lower back pain?

We are waiting for another symptom to arise, since the tethered cord is "occult"....so cannot be sure she has it.

I just wondered if anyone else could relate to having the occult version, along with this symptom.
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occult tethered cord

Postby Sara » Thu May 31, 2007 6:28 am

My daughter was 2 when dx with a small syrinx in her lower spine. By time she was 4 she was having repeated UTI's and had kidney reflux and was incontinent. So occult tethered cord was dx.

At that time- 8 years ago, occult tethered cord dx was rarely made. In hindsight, I am glad that they had strict criteria and it was not offered just for pain. My daughters cord was untethered and she did regain bladder control and has had less UTI's, but over the years she has recurrences of incontinence and it is believed it is due to arachnoiditis, scarring which can't be fixed.

I hear alot of people mention their doctors say that occult tethered cord is pretty easy surgery with minimal complications. We were not told that. We were told it was a serious surgery, with alot of pain and it was. We knew that we had no choice but to do the surgery because of her bladder issues, but she is not cured by any means. She is still on 3 medications for bowel and bladder problems and leg pain. Urodynamic studies can show if the bladder issues are indeed coming from the spine, or if they are from other causes.

Have you talked to any one about "sensory integration problems"? With a young child that can't communicate well, she could be confusing pain with sensory issues. Many children have problems with sensory issues that an occupational therapist can assist with. This site might be helpful:http://www.tsbvi.edu/Outreach/seehear/fall97/sensory.htm

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Postby pearland1 » Thu May 31, 2007 8:26 am

Thank you so much for your thoughtful response.

I would guarantee my daughter is in pain. By pain, I mean she trembles, turns red in the face, and grabs the area that hurts. When she does hurt, she almost turns into a different child (tantrums, bad behavior, etc.).
It's always when her tailbone area is on a hard surface, (sitting in carseat, sitting on hard chair), but also happens when she is tired, later in the day..she'll ask to lay down bc/ it hurts to stand up.

I appreciate your info though and will read further into the topic.

I just hate that she is in pain, and just want to find a reason for it, and almost hope that it is tethered cord, so we can try to alleviate it.

Thank you again!
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sensory

Postby Sara » Sat Jun 02, 2007 6:59 am

With sensory integration problems, children can interpret normal stimuli as painful and will avoid them at all costs. A friend of mine had a toddler that would scream and holler non stop whenever wearing shoes. To watch this child you were sure he was in extreme agony. He was checked out, x-rayed, MRi'ed and they could find nothing wrong but still he persisted in this behaviour and would not wear shoes. She learned about sensory integration problems and through therapy, he now is in school and does keep his shoes on!

It may or may be what is causing your daughter avoidance of car rides, but it might be worth asking your pediatrician about.

I know it is hard to see your child in suffering. Most of the parents here can empathize. Both of my children live with chronic pain, and I know how difficult it is to see them suffering. The best advice I have is to get a good support system. You need support and you need a break now and then too so you can maintain your strength and energy. This is a long haul, not a sprint! We're all here if you need to talk or vent.
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Postby kadiesmom » Sun Jun 03, 2007 7:09 pm

This is so hard , anytime you know something is wrong with your baby and you dont know where to turn or the doctors look over the symptoms it is HARD. My Kadie is the happiest most animated 2 year old in the world but when she hurts she hurts.From the time she was born she would scream so bad the windows would rattle if she was sitting in a high chair, car seat or just about anywhere with a hard surface. Not just any scream we knew the minute the pain started and when it eased. Her ped recommended we get a "donut " for her to sit on , i dont know if this helped but atleast it made us feel like we were doing something to help her.She was born with a sacral dimple AND after the screaming started around just a few weeks of age ,her ped thought it would be a good idea to get mri. It was completely normal except for a small syrinx.We would return 4x in the next year 2 different hospitals for mris and consults because we knew something was wrong. We were still told "everything looks ok we will just keep an eye on things". We returned to her neurosgn last week for her "follow up" and yet another mri. Kadie will be 3 in July and she is not potty trained not really aware of it happening ,now walks alot on tippy toes . The neursgn tells us that for the first time he counts her vertebrae from top to bottom instead of bottom to top and when he did it this way he realized she had one too many so he said she is tethered and we have to go get urodynamics in 2 weeks to see whats going on there . I know this is so long but i have never shared this publicly ,hoping maybe I can bring some comfort!
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Postby mamashu5boys » Tue Jul 17, 2007 2:25 pm

Hello,
My 3 year old son is healthy and happy and active, he also has several birth defects. His biggest issue is congenital scoliosis; his tethered cord and syrinx were discovered while doing an MRI for his scoli. He did not present with any visible symptoms or pain behavior for his tethered cord and yet he clearly benefited from his release surgery. I have also heard other moms mention that there child did have back, but or leg, pain yet an MRI did not clearly show a tether or fatty filum. Of those kids that did go a head and try the detethering surgery I remember that many of them no longer had pain issues. To hear this first hand from some of the parents I suggest you join my yahoo group (link below) while most people there have scoli as the main issue, many people pop in from time to time with questions like yours.
http://health.groups.yahoo.com/group/Co ... isSupport/

I think that if your child is having pain you should pursue the issue as far as possible. You may need to get a new MRI and or have a new doctor read the films. In the mean time you could try putting egg crate foam in her car seat covered by some nova foam. That worked really well for Keegan after his surgery. Also you can buy (expensive) specialty car seats or harnesses that allow a person to lie-down while riding in the car. Detethering surgery is a big deal not to be taken lightly, but it’s extremely worth it when it’s done for the child that needs it.
Best wishes,
Tiffany
Mama to 5 beautiful redheaded boys
http://babyhomepages.net/5smurfyboys/index.php
Rory age 14, Evin age 10, Brandel age 6, identical twins Keegan and Conley are age 3. J
Keegan has progressive congenital scoliosis at 60ish° a hemi vert at T-5, two fused ribs, several vertebrae fusions, a rib hump measuring at 14+, a solatary left kidney, scatterd areas of abnormal signal within the brains white matter, sacral hypogenesis, L2 conus with a filar lipoma. He also has a syrinx causing lower limb nerve damage, that we hope will clear up on its own after his tethered cord release surgery on Oct. 18, 2006
mamashu5boys
 

Postby pearland1 » Mon Jul 23, 2007 4:14 pm

Thank you all so much for your advice.
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