occult tethered cord

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

Moderator: pmaxwell

occult tethered cord

Postby memom » Wed Sep 22, 2010 6:41 pm

MaryEmma has been seeing a PT for aqua therapy. The PT has determined that MaryEmma's leg pain is nerve related. When she stretches her spinal cord the leg pain appears behind the knee. PT is saying that something is blocking the nerves from moving freely in and out of spinal cord base. Latest MRI shows no tethering. I am wondering about "Occult Tethered Cord" (OTC). Same syptoms as Tethered Cord Syndrome but cord ends in correct place.

Does anyone have any experieces they could share with us concerning OTC or tethered cord? Which doctor did you see/reccommend? Doc must see kids!

Thanks, Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
memom
 
Posts: 80
Joined: Fri Aug 07, 2009 5:25 pm

Re: occult tethered cord

Postby lttutrow » Thu Sep 23, 2010 10:36 pm

Neither of mine have been treated for this. When we saw the EDS Dr., I think she said a lot of people with EDS have their cords stretch out and get thin so that it is tethered, but doesn't always show on the MRI. Has she had a urodynamics test? I know when Keegan was being evaluated for his cord, that was one of the tests they did to try to rule out OTC. I wonder if the EDS Dr. would consult with you by phone to discuss the possibility and how it looks different in kids with EDS than the typical population?
lttutrow
 
Posts: 410
Joined: Fri May 02, 2008 10:16 pm

Re: occult tethered cord

Postby memom » Fri Sep 24, 2010 9:41 am

What exactly is an urodynamics test? What does EDS doc say to do about stretched cord? ,Have either of your kids been treated for this?
Is this Dr. Francomano you are speaking about? We see rheumatologist here in Fla. next Friday - I will see what she has to say. Thank you for sharing!!! I hope things are going well for you guys!

Lauri
memom
 
Posts: 80
Joined: Fri Aug 07, 2009 5:25 pm

Re: occult tethered cord

Postby lttutrow » Fri Sep 24, 2010 9:57 pm

The urodynamics test was our least favorite to date. It involved a full bladder ultrasound first to evaluate the kidneys/bladder. That was easy. Then they put a catheter in, also a tube in his rectum...I think that one was to measure his muscle strength. They used the cath to fill his bladder as full as they could, this was where it became incredibly uncomfortable. He was old enough that the idea of wetting himself was unbearable, and he knew he HAD to go, but they kept filling until he was in tears and literally could no longer hold it. ugh. This part was done under an xray where they watched the bladder expanding.
Yep, it was Dr. Francomano. I think she was saying that if they did have a tethered cord, they'd need to have that fixed, but it's just hard to evaluate it with eds via mri alone.
Hope whatever is causing her the pain they can find an answer for quickly!!! Keep us posted.
(((HUGS)))
Lori
lttutrow
 
Posts: 410
Joined: Fri May 02, 2008 10:16 pm

Re: occult tethered cord

Postby kellbell » Tue Sep 28, 2010 3:09 pm

hello,

My daughter had tethered cord surgery in April of 2009, not occult. I may be able to answer questions for you. She was 7 years old at the time.

Kelly
kellbell
 
Posts: 17
Joined: Sun Apr 12, 2009 5:36 pm

Re: occult tethered cord

Postby memom » Sat Oct 02, 2010 11:04 am

What symptoms did your daughter have prior to diagnosis for TC? We saw Rheumatologist yesterday and she thinks that MaryEmma's problems are spinal cord related. She wants us to rule out any GI issues so we are off to GI specialist. Also, she wants us to get second opinion from another NS and NL. MaryEmma is scared to death. She is soooo hypersensitive and the thought of more testing makes her so sad. Thanks for sharing your story with us.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
memom
 
Posts: 80
Joined: Fri Aug 07, 2009 5:25 pm

Re: occult tethered cord

Postby kellbell » Mon Oct 04, 2010 9:15 am

Hi, Lauri,

My daughter, Sophie, has been incontinent basically since birth. We always had trouble potty training her and she always had accidents and has NEVER been dry at night.

At the end of kindergarten, she started having accidents in school and by the time fall rolled around, she was having accidents in school every day. You can imagine my problems with the teacher and the school nurse, who just thought she was a lazy kid. The school nurse told me that I needed to do something about it or she would have to wear a diaper.

Polysystic kidney disease runs in my family, so both of my girls had previously had blood testing to rule out this disease and after Sophie's many accidents, she had a sonogram of that area and everything looked fine. So, the accidents continued and I took her to see the head of pediatric urology at a VERY big, prestigious university hospital in my area, and, this is a quote, he said, go home. She is six and this happens.

But, everything continued and a few months later I took her to the only pediatric nephrologist in my area. She said Sophie had an overactive bladder and she was put on adult bladder medication and a kind of schedule for the bathroom. The school had to be notified that she had to use the bathroom every two hours, etc. We also bought her a watch with an alarm to remind her to go. The medicine and this therapy worked for about two weeks.

After a year of going to the nephrologist, Sophie's symptoms got much much worse. She was having five accidents a day, severe migraines. I go back to the nephrologist and I say, I'm desparate. She says, okay, now we'll do an MRI to rule out tethered cord. Of course, we know nothing about this and do our orwn research.

My husband and I, plus her regular pediatrician and the nephrologist all think this could not be the problem because Sophie does not have the usual tell-tale sign on her back, usually a patch or an indentation. She is also very smart and coordinated. She has no trouble walking at this time and can run just fine.

But lo and behold, the MRI says she does have a fibrolimpoma. We see the neurosurgeon and immediately says she needs surgery. During the surgeon's initial exam, all these things come up as she is asking Sophie questions about symptoms, things we had NO idea about. Sophie's reflexes in her knees and arms were virtually nonexistent.

The surgery went fine except that on the night of the surgery, Sophie's left leg had diminished feeling. That eventually healed but she had months of left leg spasms. She had follow-up MRIs of her whole spine and her brain due to the spasms and we were afraid she had retethered already. She did not.

A year and a half later, Sophie is currently have accidents again and she also does not always have control of her bowels, which you can imagine how that is.

My older daughter just told me this morning that kids on the school bus make fun of sophie and say she poops in her pants. So now I know why Sophie wants me to drive her to school. Currently, I am at a loss of what to do to help her anymore.

We are DEFINATELY glad we did the surgery. Problems were progressing so rapidly, Sophie might not be able to walk by now if we had not found the limpoma. But, the doctor said that finding this out at seven years old was not a good thing. She was very old by that age for correction so she does have permanent damage. so, we have no regrets about the surgery and feel it was TOTALLY necessary.

I know this was very long, but that's our story, which stills continues. If you have any questions, please feel free to PM and I would be very happy to share anything else or answer any questions.

Take care,
Kelly
kellbell
 
Posts: 17
Joined: Sun Apr 12, 2009 5:36 pm

Re: occult tethered cord

Postby memom » Fri Oct 08, 2010 6:41 pm

Hi Kelly,

Thank you for sharing Sophie's story. I am sorry that Sophie continues to have problems. MaryEmma has had constipation since birth. She has had several occassions lately where she does not make it in time. This is happening with both bladder and bowels. Yesterday we were in the ER with her because she could not swallow for four days in a row. We have to see NS and NL next week.

I will keep Sophie and your entire family in my prayers. Again, thank you for sharing Sophie's story.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
memom
 
Posts: 80
Joined: Fri Aug 07, 2009 5:25 pm

Re: occult tethered cord

Postby Becky1219 » Sat Oct 09, 2010 3:59 pm

Jack had he tethered cord released in 6/09. He had a deep sacral dimple and the TC was seen on the MRI. He did go through urodynamics testing which did show a neurogenic bladder (he was only 2 at the time, so we hadn't even attempted potty training). The surgery itself was quick and recovery the best and fastest of any of Jack's surgeries to date. His 3 month post-op urodynamics was worse than prior to surgery, 10 months post-op it looked great and we were given the go to try potty training. Jack is almost 3 1/2 now and there are still concerns that his bladder may still be neurogenic. At his urology appointment 2 weeks ago we decided to see how things go for the next 6 months and then possibly do urodynamics again. Like Lori said, it is a terrible test, and I'm holding out that Jack is just still too young to fully understand "how" to hold it, however the fact that he has to strain to go about half the time isn't promising. He also continues to wear orthotics for low tone that is better, but still a slight problem. Good Luck!

{{HUGS}}
Becky
Becky, wife to Mike, mom to Logan 4/3/04 and Jack 5/4/07 30 weeker EA/TEF, bowel perforation, CM1, SM, TCS, hydrocephalus, metopic synostosis, thin corpus callosum, decreased myelin, and the many issues that go along with these
Becky1219
 
Posts: 24
Joined: Sun Jun 21, 2009 8:59 pm
Location: Indiana

Re: occult tethered cord

Postby kellbell » Tue Oct 12, 2010 8:59 am

Dear Lauri and Becky,

My thoughts and prayers go to your families too. We can all relate and we all just want the best for our children. Sophie quite often feels like she is being punished and she says, why do all the bad things have to happen to me.

It is heartbreaking. Hugs to both of you.

Kelly
kellbell
 
Posts: 17
Joined: Sun Apr 12, 2009 5:36 pm

Re: occult tethered cord

Postby Dakota's Mom » Sat Oct 16, 2010 10:03 am

Hi, Kelly.

Our son had tethered cord surgery 5/08. He was 11. We battled for years with classic TC symptoms but had no clue. Our Ped questioned it, and he had an MRI when he was three. It came back "normal" but the symptoms progressed over the years.

Eventually a syrinx and scoliosis were discovered. Although the MRI did not clearly show TC, the NS felt that his symptoms warranted surgery. It was the best thing that we did. Although the MRI showed no clear TC, once they got into surgery, it was one of the thickest filums that he had seen. Search this board for tethered cord (if you haven't), and you will find lots of great info, and you can read the posts on Dakota's surgery and symptoms.

We have done all of the uro tests many times over the years. Neither Dakota or I thought that any of them were horrible--I always insist on the smallest cath possible which makes it more comfortable. [I feel the GI tests are way worse, but it is different for everyone.] We use a children's hospital and have a ton of child-life support to help get us through the yucky stuff.

I always tell everyone to make a list of any symptoms (including any activities that may result in an increase of symptoms). This helps greatly in diagnosing TC--especially when it is not showing clearly on MRIs.


Good luck, I hope you find support and answers soon.

Rachel
Mom to Dakota (11)--Neurofibromatosis, SM (C2-T8), Left Thoracic Scoliosis, Seizure Disorder, Autism with Cognitive Impairment, Osteoporosis, Hypothyroidism, Untethering surgery 5/08
and Joshua (8)--happy, healthy, and supportive brother
Dakota's Mom
 
Posts: 62
Joined: Sat Oct 20, 2007 6:17 am
Location: Omaha, NE


Return to Pediatrics

Who is online

Users browsing this forum: No registered users and 8 guests

cron