Anyones have experience with a lipoma? Teathered Cord? DD has one in her spine! - Mothering Forums
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#1 of 12 Old 12-30-2009, 10:11 AM - Thread Starter
 
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One of my 4 yr old DDs has a lipoma ( fatty tumor) in the fibula terminale (part of the lower spine). It was just found on MRI- the simple report showed no tethered cord, but a lipoma can lead to one.

They found it when looking for reasons she is not potty trained at 4. She has seems to have very little bowel or bladder control. She is also very slender at 31 lbs at 4 yr old. She has gained no weight since last spring (3.5)- but is a good eater.

No known food allergies, but some seasonal ones. She is asthmatic.

She was a preemie twin and had gross motor & feeding delays until about 2.5 - 3 years ( had PT & OT).

As of a year ago upon dismissal of Early Intervention she was on track or advanced in all areas EXCEPT self-care since she is not potty trained.

From what I've read (we dont see Neuro until late Jan) it can lead to Teathered Cord Syndrome.

Any experiences??
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#2 of 12 Old 12-30-2009, 10:49 AM
 
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I can help you.

My daughter has Lipomyelomeningocele, Tethered Spinal Cord, Neurogenic Bladder and Neurogenic Bowel. She was born with a hemangioma at the base of her spine. The Lipoma was under the hemangioma. Unfortunately our Ped blew us off that the hemangioma was normal. Uh no, it can be a marker Spina Bifida Occulta. Which is a closed Neural Tube Defect.

Are you going to a children's hospital? We are currently in St. Louis and see Dr. Leonard at St. Louis Children's. However, my daughter was born in Southern Cal and had her first de-tethering Children's Hospital of Orange County. We were living in Montana when she had her second de-tethering. For that one we had to go down to Primary Children's in Salt Lake City. Dr. Walker did that de-tethering.

How are your daughter's legs?

This talks about Lipomas and Lipomyelomeningocele. Which there is a difference. My daughter did not have a laminectomy. Her incision was huge.

http://neurosurgery.ucla.edu/body.cfm?id=227

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#3 of 12 Old 12-30-2009, 10:50 AM
 
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You are seeing a Pediatric Neurosurgeon, NOT a Neurologist right?

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#4 of 12 Old 12-30-2009, 11:13 AM - Thread Starter
 
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THANK you!!!!

It is hard not to have more info--rather than a nurse giving it to me over the phone.

We are schedule to 'revisit' her Neurologist. She saw a ped Neuro for the 1st 2 years and had a dx of mild trunk/leg CP as a baby, it was upgraded to muscle imbalances, and then she was dimissed since she was hitting all milestones after age 3 (except potty training). She has always been 'tight' with good posture (upright back) and she had PT for 8 months for gross motor skills/stiffness but as a preschooler it seems to have resolved (or she has adapted) and nothing is apparent when she is placed with her peers. Her neuro commented that as a toddler she should 'not' have walked as early due to tightness, but she did. SHe has a VERY stubborn- persistant, will do attitude. She also had low tone orally and had difficulty (also with reflux) chewing, but that too has gotten better as she has gotten older (and she had OT).

The MRI was done by her GI doc, she has reflux and we have dealt with chronic constipation since birth. She did not think that the incontinence is related to the lipoma(per asking the nurse), and that it was an incidental finding- they are sending us to the Neuro 'just to make sure'. She is scheduled for a barium enema and an appointment with a Urologist after the new year.

It is odd--since we worried about her a lot more---but with the exception of Potty Training, she seemed to gain ground on her early delays.

She has a hemangiona on the back of her head and lots of birth marks (tan), but no sacral dimple or other unusual findings on her lower spine.


We are in MI, the pediatric Neuro in at a local hospital. If we need more or a pediatric neuro-surgeon we will get sent to University of Michingan or Detroit Childrens.

Thank you for the info, I really appreciate it. I hope to get more details after we see a Dr, but everyone is on break til after the New Year.
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#5 of 12 Old 12-30-2009, 02:22 PM
 
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I can help you also. My son just had his released in November and I am so glad- he pees much better now. We did it with Dr. Bowman in Chicago who apparently is the top surgeon for tethered cords.

I also would not go by what the nurse says - pediatric neurosurgeons would call a fatty filum a tethered cord, btw. It is the easiest of the ones to fix surgically, too.
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#6 of 12 Old 12-30-2009, 02:49 PM
 
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Did they do an MRI of the lumbar, thoracic and sacral? Or just lumbar?

I would get a referral to a Pediatric Neurosugeon. This is something a Neurosurgeon should be handling, not a Neurologist.

I would also request a copy of the Radiology Report. What exact did the Radiologist find?

I am not sure of a fibula terminale. Are you sure it's not a fatty filum?

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#7 of 12 Old 12-30-2009, 03:04 PM - Thread Starter
 
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The nurse told me " a 1.5 mm lipoma of the fibula terminale"- I wrote it down & had her spell it! MAybe I miss heard her on the phone and it was filum, there was a lot of background noise. She could not tell me a reference for 1.5 mm at all (big small, etc). She stated that it was an incidental finding and had no bearing on her incontinence/GI issues, though the more I read the more I think it may have implications to her lack of Potty training.


I will get a copy of the report when we see the Dr. The MRI clinic will not release it to anyone but a doctor, but we can get copies from the GI and then take them to the Drs we see.

It was an MRI of the lumbar region maybe sacral too- I will have to check. I know that thoractic was not included in the order.

The Chicago reference is good to know. I have family in that area if we needed to go there and stay.

You ladies are great! I knew MDC was the place to get better info and BTDT moms.
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#8 of 12 Old 12-30-2009, 03:18 PM
 
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I don't know much about tethered cords, only that all three of my sons have sacral dimples so it's been mentioned, but doesn't appear to be a problem.

BUT, I do know that U of M is a GREAT place, I would feel very comfortable taking my kids there for anything. There might be drs at other locations that specialize in specific areas, but U of M is known for being one of the top. At least for your initial appts, you should be in very good hands there.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#9 of 12 Old 12-30-2009, 03:24 PM - Thread Starter
 
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Quote:
Originally Posted by 2boyzmama View Post
I don't know much about tethered cords, only that all three of my sons have sacral dimples so it's been mentioned, but doesn't appear to be a problem.

BUT, I do know that U of M is a GREAT place, I would feel very comfortable taking my kids there for anything. There might be drs at other locations that specialize in specific areas, but U of M is known for being one of the top. At least for your initial appts, you should be in very good hands there.

I dont know about the pediatrics, but have only heard good things, but I was NOT impressed when I had to get a second opinion at UofM for myself about an endocrine issue. I was blown off about legitimate concerns and asked over and over if I had an eating disorder (I dont) and my eating/sleeping habits because my BMI is the low end of normal....so I am lukewarm about them.It is funny how ONE dr can make you rethink a whole system.

but pediatrics is different- I know they have a world class Peds department. Our local hospital was the level III NICU where the girls were born, often babies were transferred between UofM and Hurley depending on what was needed---some of UofM NICU overflow was flighted in when the girls were at Hurley. Hurley has been GREAT so far, but I dont think they do pediatric neurosurgery---they are a large hospital, but small compared to UofM!!
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#10 of 12 Old 12-30-2009, 03:36 PM
 
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If you are interested, you could join a yahoo group I am on. It's the LMC-TCS group. There are alot of ladies on the list that have been at this longer than I have and have more knowledge. There may be someone in your area to give your an idea on Docs who would be good to see.

http://health.groups.yahoo.com/group/LMC-TCS/

I still can't find anything on google about fibula terminale. I think the nurse is reading or got the wrong information.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#11 of 12 Old 12-30-2009, 03:49 PM - Thread Starter
 
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Quote:
Originally Posted by KatWrangler View Post
If you are interested, you could join a yahoo group I am on. It's the LMC-TCS group. There are alot of ladies on the list that have been at this longer than I have and have more knowledge. There may be someone in your area to give your an idea on Docs who would be good to see.

http://health.groups.yahoo.com/group/LMC-TCS/

I still can't find anything on google about fibula terminale. I think the nurse is reading or got the wrong information.

Thank you---I bet I heard it or the nurse spelled it wrong. From looking at info in sounds like it was the 'filum terminale'. I looked under spinal lipomas and pediatrics---mostly filum came up. I will get the report as soon as I can and see what it really says!
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#12 of 12 Old 12-30-2009, 04:22 PM
 
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This is what my son's MRI report said...

"There is a low lying spinal cord with the conus terminating at approximately the mid L3 level. There is heterogeneous but predominantly fat signal intensity along the length of the filum terminale extending to the distal thecal sac. This measures approximately 5 x 5 mm in axial dimension (image 6 series 5) extends for length of 4.4 cm."

It is the combination of low lying spinal cord and the fat on the filum terminale that they call tethered cord syndrome. I really would only speak with a pediatric neurosurgeon about this and not the neurologist. There are some findings that on autopsy, 6% of people have fatty filums but saw no problems and were only found out to have fatty filums on autopsies. Many neurosurgeons just wait and see what happens and others do the tethered cord release. It all depends on symptoms.

My son has no sacral dimple or any other outward signs. This was found because he stopped peeing after a surgery last year and did not pee for 9 months.
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