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fatty filum/spinal lipoma - toe walking?

post #1 of 18
Thread Starter 
Our son had a MRI for his toe walking- just to rule out anything neurological. We just got a phone call from the dr and they found a lipoma or fatty filum on the spine... not something they are really worried about, but something they want us to consult with another doctor for. It was found L5-S1.

Of course this means very little to me right now, but a brief search has found some conditions that cause difficulty with incontinence. And other that could cause some neurological degeneration (hence the toe walking coudl be a concern), and the majority of these lipomas being harmless.

So I am a little bothered about the link to incontinence. Plus he is really toe walking right now, its gotten worse lately.

I also have lab tests coming back for general nutrition and a tick panel- just to rule our lyme, etc. He's just seemed a bit tired some days or grumpier than I think he should be- and since he's SUCH a picky eater I wanted to get some idea of that, too. I just feel like he's not his optimal health right now, and looking at his diet, I know it lacks a bit. We do try to keep what he eats relatively healthy but he's picky (high in dairy, lots of pb&j, crackers, cereal).

So why am I concerned about the incontenence? Partly I wonder if it is because durng the office visit the doctor really kept askign questions about that. Any changes, etc. So I think its bugging me that this came up in the screen, although likely it IS unrelated.
I actually ec'ed with him, but even though he potty learned early, he still has been unable to wake up at night to go to the bathroom (or hold it through the night). There were times when he was very young that he wanted to pee at night and others where he'd scream if I offered him the potty-- so I kinda followed his cues. But after he didn't need me to cosleep the nighttime pottying (2 1/2) didn't really happen and when we did try (on his cues) we might not do it for very long-- he'd get so upset and discouraged at waking up wet he'd only want to try for a few nights and then request dipes after that. Then there was a l o n g stretches where he just wasn't interested in trying. And a 4 year old boy in diapers at night just isn't considered abnormal these days.

This hadn't concerned the doctor because he was looking for a change in pattern. And I didn't go into details about our EC history cause I figured it wasn't relevant and would only confuse things- but there really wasn't a change by traditional pottying standards.
Anyhways, We always finish eating and rush to bed, so its never been ideal for him-- and snce he's such a heavy sleeper it was something I wasn't concerned about it - but at times it has seemed strange that its so hard for him at night.

The toe walking lately is quite extreme too. It looks uncomfortable. He has one foot that is really tight that causes the other one to go up on the toe too, so that was one reason we decided to pursue the issue, plus another family member had a similar problem and she never grew out of it. It seems the more we bring it up (we do stretches and weekly pt with him) the more he toe walks.

It was intersting during the eval, he really took a history, especially of the birth. So I wonder about the epidural and pitocin induction that I had being a factor. I had high blood pressure at the end of my pg with Josh, was on bed rest and luckily went into labor on my own, but I was on a bit of a 'timeline' for them and didn't progress so did end up with more interventions than I wanted. Anyways, they clearly were in favor of the natural birth being best, but I ddn't get much time to chat and ask what things they see as a result of interventions... I just got a vibe that that's the kind of thing they were looking for. Interesting because everytime we mention the toe walking thing, the reaction we get is that there is a bit of an 'increase' in this these days. (like while waiting for the mri, the techs were talking to each other 'mri for a toe walker'... to us ' oh, w'er seeing a lot more of these lately')

Of course, Josh was also partially vaxed till I stopped. So he had a full round at birth and 1st pedi, then I spaced them, then I stopped after a year, maybe. He has not had mmr or varicella and didnt' get a full series of a few (dont' remember what). He had a minor/typical reaction to one of the combos (fever after). I also remember one time he did have a high fever with febrile shakes and I wonder if that was after a vax or not (maybe 3-5 days later, I wouldn't have known back then that it coudl still have been a vax rx). I may try to weed thru his records.

Also adding (post 5) because it occured to me later:
Other things I've been thinking of:

Ds complains about his legs, knees or feet hurting. Sometmes like they fall asleep after sitting
Sometimes its almost been like 'growing pain' type hurts.
He's also rough enough on his body that its hard to know if he just doesn't hurt from jumping around on his knees legs etc.

Grinds his teeth at night

anyways, just wondering if anyoen knows anything about this or has any ideas where to look for info. I'm not sure what questions or information I should have for the doctor that we will consult with.

Its always hard to sort out what's relevant or not, so sorry for ht e novel. But its good for me to write it all out anyways.


Next week: Appt with Pediatric Orthopedic (was set up before the MRI)
Late October: Appt with Pediatric Surgical Neurologist
Ongoing: Physical Therapy
post #2 of 18
Thread Starter 
Oh, and Im sure I'm not alone for almost seeming to look to blame thngs on vaxing or the darn epidural/induction. I just admit it DOES sometimes cross my mind, and its not likely that I'm going to hear that from the doctors. But I do wonder...
post #3 of 18
I don't think it was anything birth related but I am concerned about the mass being to blame. Who did you see? A specialist? Are you scheduled to see a specialist? I think you need too.

Try posting this on the special needs forum-the stuff about the Lipoma on the spine and the toe walking. There are some parents with experience with occult spina bifida and related things. The toe walking as you describe it and MRI findings would warrant further looking I think. I'm no expert in this area though.
post #4 of 18
Thread Starter 
We've seen a neurologist, who ordered the MRI, based on the toe walking-- and especially because it is far more prevalent on one side. In the meantime we are set up to see an orthopedic dr, that happens next week and was scheduled well before the MRI. After the MRI result the neurologist recommended we see a surgical neurologist for a consult, which just got set up for the end of October.

Before we got the appts with the specialists we started pt-- it just took a while to get in to the offices and our pedi figured we could start that right away. We've been going weekly since early July?? I'd have to say the toe walking has gotten much worse since we started pt.

Rachelle, I'm not sure that I'm understanding what you mean.... are you concerned meaning that you think the mass might be to blame, or concerned that it is misleading us into thinking the mass is to blame?

Sorry, I easily misinterpret things so wanted to double check which was what you intended.

post #5 of 18
Thread Starter 
Other things I've been thinking of:

Ds complains about his legs, knees or feet hurting. Sometmes like they fall asleep after sitting
Sometimes its almost been like 'growing pain' type hurts.
He's also rough enough on his body that its hard to know if he just doesn't hurt from jumping around on his knees legs etc.

Grinds his teeth at night

post #6 of 18

You need to see a Pediatric Neurosurgeon. This sounds like a tethered spinal cord. Don't waste your time with a Orthopedic Surgeon. It is imperative you get to a NS because as your child grows and the spinal cord is tethered it is stretching and damaging nerves.

My daughter has lipomyelomeningocele, tethered spinal cord, Neurogenic Bladder and Neurogenic Bowel. She has now feeling or movement below her knee on her left leg. She wears a KAFO brace on that leg.

Are you near a childrens hospital?
post #7 of 18
Thread Starter 
Thanks Anne,
We will be seing the pediatric neurosurgeon at the end of October, we just have the appt. with the orthopedic dr set up before then.

We have been seeing the docs at Children's in Boston.

post #8 of 18
More thoughts.

If it is a tethered spinal cord (which I highly suspect is) vax or not vaxing has nothing to do with it. So please don't blame yourself for what you should or shouldn't of done.

Here are a couple of things for you to read:


Where on the spine is the lipoma? Now I am posting this link, but don't assume your child has what mine does. But it does talk about spinal lipomas. My daughters lipoma was/is at the base of her spine. She had her first de-tethering and lipoma debulking when she was 4 1/2 months old.


Here are a bunch of fact sheets. However the one I want you to read is on Spina Bifida Occulta. I can't post the direct link because its a word document on their site. So go to this site and scroll down and link on the link for Spina Bifida Occulta.

post #9 of 18

I would see if you can move out the NS appointment. If it is a tethered cord, the longer you wait the more damage is being done. Once the nerves are damaged, they can not be repaired.

What is the Ortho appointment for?
post #10 of 18
Thread Starter 
The ortho is for the toe walking... We had that set up before the MRI, and were of course thinking that the MRI would come back showing nothing. Now we still are going on the assumption (and what we've been given) that the fatty lipoma is benign and nothing to worry about, what we are left with is toe walking.

We've been thinking that the ortho would probably prescribe night splints, or night and day splints to help stretch the achilles and get Josh to walk in the right position on both feet. Right now he could walk flat on one side (with some reminder) but his left side really overrides that and is far tighter.

As for moving up the appointment, we took the first one offered to us. I'm inclined to do my research and at the very least wait till after next weeks consult before getting worried. If ds mentions his legs are sore/knees hurting, I'll probably call and try to see about moving things up.

I've also gotten a copy of the summary to be sent to me and our pedi, so hopefully we will get that in the mail today or tomorrow.

The fatty lipoma was L5-S1

I'm going to check out the links, thanks so much.

post #11 of 18
Jessica, I'm glad KatWrangler found you.
I meant that I suspected (with my limited knowledge) that the MRI findings were causing the toe walking. Which is serious in terms of a tethered cord/spina bifida occulta or similar because damage done isn't reversable.
I'm concerned with the increased toe walking, pain, and the falling asleep. Tingling/falling asleep is often nerve damage (I have nerve damage for other reasons).

I'm glad KatWrangler got those links for you. It is my understanding that this isn't something you want to wait on because if it is spina bifida occulta/tethered cord/etc. time waiting is damage.
post #12 of 18
Thank you Rachelle!

I will be right back, baby is calling me. I will try to explain how toe walking is a sign of tethered spinal cord.
post #13 of 18
Lipomas are ALWAYS benign. I think the definition is "Benigned Fatty Tumor". Which can occur anywhere in the body. However, it can be a sign of SBO and tethered spinal cord if it is on the spine.

Here is another article for you to take a look at. Sorry its from Dec 2005. The field of Neurosurgery changes fast. :


Symptoms in Children

Lesion on the lower back
Fatty tumor or deep dimple on the lower back
Skin discoloration on the lower back
Hairy patch on the lower back
Back pain, worsened by activity and relieved with rest
Leg pain, especially in the back of legs
Leg numbness or tingling
Changes in leg strength
Deterioration in gait
Progressive or repeated muscle contractions
Leg deformities
Spine tenderness
Scoliosis (curvature of the spine)
Bowel and bladder problems



I am glad you have an appointment with Boston Children's. I think they are very good. So you would be in good hands.

Let me know how all your appointments go. I will be thinking of you.
post #14 of 18
Another question about your sons legs. Is one leg longer than the other? How do the calfs look?

One of the first signs of something wrong with my daughter was when she was 2 months old. I noticed her left leg was floppy and her foot was cold, purple and pointed down. I mentioned to my husband if he noticed anything he said yes and did I see that the calf of the left leg was smaller in circumference than the right. I knew something else was wrong, but couldn't put my finger on it.

So back to Ped who measured the calf and said yes one is smaller than the other and then to the Pediatric Orthopedic Surgeon who suspected a spinal tumor (my daughter was born with a hemangioma at the base of her spine). He ordered an MRI and told us to see a Pediatric Neurologist. So we saw the Neurologist and she suspected a missing nerve in her leg. So we had the MRI on a Wednesday. The Ped called us Friday night and said its bad and its complicated. You need to see a Pediatric Neurosurgeon next week.

The next Thursday we saw the Pediatric Neurosurgeon. He explained what she had and what her life might be like. In the meantime she was losing her right leg. It was also cold and floppy. Foot dropped down as well. She was deteriorating rapidily. The Doctor said we need to do Emergency surgery. So on Monday morning she had her first surgery.

This was a 2 1/2 month process from Ped to surgery. In the back of my mind I wonder if we had diagnosed her at birth? If we had diagnosed her at 2 months. Would that of saved her leg? Would that of saved the nerve damage to her bladder and bowel?

So I don't want to come across as aggressive. Please understand that.

post #15 of 18
Thread Starter 
No, I'm very appreciative, thanks for the information. The challenge is for me to wade through it all and figure out what we do.

I've been feeling that somethings not right maybe more from a nutritional aspect. Picky eater... he sometimes looks tired when he shouldn't be, things like that. He had a tick on him (not a deer tick). Grumpier than I'd like to say is normal.
But on the other hand, he really appears, most of the time, a super healthy energetic 4 year old that literally bounces off the walls (and has the bruises to show for it).

He takes after dh, so I'm not surprised he seems worse toe walking because we are now constantly 'reminding' him of it (stretches 2 X a day, pt once a week and the reminders throughout the day, even if it is positive reminders).

The neurologist did take a good look at him, and a good history (I mention the collection of birth info, because I was impressed at the info they collected), so I believe they should have caught things like calf size, etc.

So this is a big shift. And I'd hope that if they were really seeing more red flags they would give us more info.... especailly a note to call them immediatly if anything x, y, or z started to happen?

Anyways, thanks.

post #16 of 18
Thread Starter 
thanks for clarifying. Its my mind that sometimes loops things in a way they shouldn't so I wanted to be sure
Originally Posted by sbgrace View Post
I'm concerned with the increased toe walking, pain, and the falling asleep. Tingling/falling asleep is often nerve damage (I have nerve damage for other reasons).
I'm going to try to ask ds about this more. It is hard for him to explain-- and my dh is the one that gave him the idea his leg might be 'falling asleep' so sometimes I think he says what we 'want' to hear because he doesn't necessarily have the vocabulary to explain.
He does tend to say it when it makes sense.... he might be crouched on my lap (wth dd there) to have a story and then his legs might hurt when he gets up, for example... so the falling asleep makes sense, kwim? Or he would be playing blocks/legos for quite a while in one position on the hard floor.

And other times its because we want him to do something less fun than the current project (-;

I find I'm putting on my detective hat more and more...

post #17 of 18
post #18 of 18
Hi there,

I came across this thread while I was searching lipoma filum terminale condition for my daughter. My 3 year old also walks little bit differently. She don't put her right heel cord on ground. When she took her to orthopedic at around 18 months they said she has pigeon toe, that she will outgrow with time. But at around at 2.5 , her walk was not getting any better rather worse we again took her to same orthopedic who this time told us she may have some neurological issues. Our whole world shattered. She was full term baby, no complications in pregnancy and delivery. How could it happen?
Anyway, so from this June we are running around with doctors appointment, recently her spine MRI got done. Radiologist noted some fatty filum terminale condition. We have an appointment with neurosurgeon on 18 th nov. meanwhile I am researching about the condition.
Just wondering if anyone has any thoughts/ story / hopes to share. Please.


How is your son doing now? Does he underwent any surgery ? Is this condition can be corrected ?

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