I made these 'learning posts' in June for Spina Bifida Awareness month, but thought I'd make a stand-alone blog so that if anyone is interested, all of the information is here. And I can add as I learn more about spina bifida as well!

Spina Bifida is the most common birth defect in North America. My son Nickolas was born November 13, 2009 with spina bifida and I have chronicalled our journey here, in my personal blog.

I hope you enjoy and learn something!

The information from this blog has been collected by myself to share what I have learned. It should in no way replace medical recommendations or consultation. This is for educational and information purposes only.

Start by picking a topic below:

Monday, June 18, 2012

Lesions, Levels, Sensory and Mobility

It's all about the letters and numbers.

For those not in the spina bifida world there are actually 2 sets of numbers and letters to work with (actually maybe 4), which represent that lesion (where the spine was damaged) or level. One is motor ability and the other is sensory ability. Then there is actual level and functional level. Am I confusing you yet?

Some basics: The spine is made up of vertebrae (bones) that have letters and numbers. From the top down we have 8 cervical vertebrae (C1-C8), 12 thoracic vertebrae (T1-T12), 5 lumbar vertebrae (L1-L5) and 5 sacral (S1-S5).

The spinal cord and nerves are protected by the bony vertebrae. The nerves send messages back and forth to/from the body and brain.
Sensory lets your brain know what different parts of your body is feeling
Motor function lets you brain tell your body, muscles what to do.


The lesion means that the protecting bony part of the spine did not develop and the nerves are exposed and damaged. Unlike a spinal cord injury - where there is usually a clear line of function versus no-function, spina bifida can be patchy with lesion levels that might not equal functional level.

So what does it mean?

Sensory level is easy to determine, it just means what does someone actually feel.
Does an infant, child or adult feel when you touch? When you tickle?


 You can see from both these pictures that it is not a straight line.
The nerves feed into different muscles and part of the body and it is different at the front and the back of the legs.
With Nickolas, I feel that he can feel down the front of his legs, and up the back of his calf, but nothing at the back of his thigh. So... that would give us about a S1 sensory level.

 Functional level is a little tricky.
Muscles get messages from different nerves - this is called innervation.
When I ask someone to give me a number and letter, they always tell me that it's their best guess. And with infants and children, it will take time to determine. There is also no clear-cut answer.

When scientists all got together in a room and drew all of these charts they had to draw a line in the sand and say 'this muscle = this vertebrae/nerve'
To get an idea of what I mean you can look at this medical illustration linked here.

The Spinal Hub website outlines exactly what function spinal nerves do to muscles. Also a powerpoint presentation here.



Diaphragm/ Shoulder
Breathing/Shoulder shrug
Deltoid/ Biceps
Lift arms, sideways/Bend elbow
Wrist extensors
Lift wrist back
Straighten elbow
Grip object


Splay fingers apart
Chest (intercostal)
Allow ribcage move/breathe
Chest (intercostal)
Allow ribcage move/breathe
Chest (intercostal)
Allow ribcage move/breathe
Chest (intercostal)
Allow ribcage move/breathe
Chest/ Abdomen
Ribcage move/Cough
Chest/ Abdomen
Ribcage move/Cough
Chest/ Abdomen
Ribcage move/Cough
Cough, balance
Cough, balance
Cough, balance
Cough, balance


Bends hips
Bend, flex hip joint
Quadricep/Hip adductors
Straighten leg at knee
Bend ankle, draw foot back (dorsi-flexion)
Lift ankle/Lift big toe


Bend ankle/Point toe (plantar flexion)
Toes/Anal, bladder sphincter

Anal, Bladder sphincter

Anal, Bladder sphincter

Anal, Bladder sphincter

When you start looking up things like this, it is almost like you need a separate textbook to understand what these pictures are telling you! One site that was very interesting in the amount of depth of information came from medical school notes, found here.
I love medical students that put their studying online like flashcards here.

Plain English please!

All of those muscles get confusing!

Especially when your physio talks about 'oh I think there is definitely ____ muscles, not sure about ____ mucles' and you are trying to remember grade 12 biology. So Glutes, quadracepts, and hamstrings are the ones that stick out for me on those pictures.

Muscle Ability
Muscle Group
Nerve Innervation
Thigh flexion

L1, L2, L3, L4
Thigh adduction

L2, L3, L4
Thigh abduction

L4, L5, S1
Extension of leg at hip
Gluteus maximus
L5, S1, S2
Extension of leg at knee
L2, L3, L4
Flexion of leg at knee
L4, L5, S1, S2
Dorsiflexion of foot

L4, L5, S1
Extension of toes

L4, L5, S1
Plantar flexion of foot

L5, S1, S2
Flexion of toes

L5, S1, S2
Anal wink

S2, S3, S4

Some sources for this chart here and here.

Muscles receive messages from a number of nerves. Can't anything be easy?!
So trying to determine what a level is by what someone can do or feel is not as easy as the colourful pictures lead you to believe. If you are trying to determine the functional level that your child has, I am just repeating what I found online as well as what our physiotherapist explained to us. I used alot of this information to try to decode or translate what we were told - not to diagnose. (OK maybe I tried to diagnose a little bit when I didn't like what I was being told)

I looked at a bunch of articles that talked about flexion and extension and abduction/adduction. Then I had to look up what all of those meant, and then I had to look up pictures.



Knee extension

Knee flexion

Hip flexion

This is one of the most frustrating part when you are trying to imagine what you child will be able to do. All of this information and pictures and illustration will not let your child do something that their nerves will not allow them to do.
Labelling your child as a number and letter will not help anything (I can say this from experience and from fighting with myself about wanting a letter and a number). Being aware of what information is out there, and celebrating the achievements and abilities of your child and trying to educate yourself  is what I hope people get out of this information post.


  1. Finally I'm less confused! It feels great.

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  3. Very nicely done. Thank you.
    Just one note: Knee flexion (bending up against gravity) and knee extension (straightening the knee out in front of you when sitting) should be reversed in your labeling, which you have done Above each photo, not below. Cheers!

  4. My doctor had told me that my spina bifida is S1 L1.... So im still confused... I just found out that I had this about 6 months ago.... but my mother has always said my entire life I have complained... but my doctor says its nothing... Should I be considering finding a new doctor?

  5. I was found to have an open S5 in 1998 at age 43, but it didn't bother me until my bladder nerve function diminished so much that I was diagnosed with neurogenic bladder in 2011, and since then I'm unable to urinate and must remain with a foley catheter...

  6. Hi, thank you so much for posting this blog. This indeed is quite helpful. We incidentally discovered yesterday that our son, 13 years, have spina bifida at T1 level. We wish to consult an expert but are split between Neurologist and Neurosurgeon. Kindly share your understanding on this. Just to reaffirm, we discovered this incidentally and have not witnessed any kind of trouble with our son till date.

  7. Hi everyone,
    I updated this post and removed old links. I also updated the knee extension and flexion from the comment above. So as of Feb 2014 this is correct.
    If you get a diagnosis of spina bifida as an old child/adult then it would be spina bifida occults. Which has less nerve damage. I recommend talking to your doctor. If surgery is not indicated, I do not know what information a neurosurgeon could give you. But neurosurgery is who we have had all of our contact with.

    I am glad everyone has found this helpful.\Thanks

  8. Hi I was diagnosed at birth 41 yrs ago after birth, my scar is S1-S5 and I have bowel, bladder, sexual and some sensation and mobility probs in the legs but atm not severe. My question is which SB I am cause what has been suggested could go both ways. At that level my wound was open and nerves severed and exposed, but I am wondering if it was open due to rupture from a natural birth which then would make me a different level SB.

    1. I would guess you have myelo, based on the fact you say your wound was open/ nerves were exposed. I don't think that the method of birth affects the level of SB.

  9. I found this somewhat helpful. My son Daniel has a spinal cord injury.

  10. I liked this post very much. Very much informative which vanishes all my confusion. My infant is suffering from Spina Bifida Level1-level5 but her leg movements are normal like other child. I am awaiting for her weight increase to 4kg so that she can go under MRI.

  11. Thank you for posting this. Our 24 year old grandson has mylo spina bifida at L4/5. we have always been very involved in his life and his doctors visits and many operations. His mother and us always encouraged him to do whatever he wanted to do and not to think that being handicapped would stop him. We were told at his birth he wouldn't be able to move from his waist down but he sure has proved the doctors wrong! He does have to use a wheelchair and he also uses his crutches for very short distances and in the house. He was in the boy scouts and almost made eagle but due to not getting his paperwork in before he became too old did not get it. He played trumpet in his high school band and now plays in two bands where he lives. He does have a learning disability but that just means he may have more problems learning something and has to have it explained in different ways. Due to his mother being an English teacher he writes very well. He does take anything said as very literal which means you had better mean exactly what you say. He is a very intelligent person. I am not saying it was easy raising him but it has been so rewarding and he is a wonderful person.

  12. Originally I was told that Logan’s lesion level was L3/4.

    But after Logan was born I started observing him closely during his PT sessions. Basically I think that he acts as if his defect level is T12. This is higher than we initially expected but oh well. I found this information somewhat useful in determining defect and sensation level. His PT and orthopedist feel that he is bullseye L1-2. I’ve never asked his urologist about his lesion level it’s like asking a NS about SB foot problems or bowel and bladder health. The only specialist who can accurately describe function levels is the NS. Ignore what you are told by the MFM doc or any other health care professional specialising in SB care. My son’s medical team have varying opinions on his actual level. His EI PT says L2/3.

  13. Hugs

    My daughter has SB. She is now 18mths old. Her lesion level is T12. While she does not walk unaided she can crawl around her room to keep up with her twin brother her partner in mischief making. And play with her toys at the table whilst I prepare meals for them as well. Kate uses HKAFOS as part of her therapy regime set by her PT. We are currently trying to find out if we can get her a wheelchair for long term distances.

    She has clubbed feet and neurogenic bladder and bowel too. I’l admit that I did look up function charts online after we learned of the diagnosis. That was my biggest mistake ever. We also ordered a exercise ball online for her to use at home with her therapist too. Kate and Harvey love to keep us on our toes constantly that’s for sure. Apart from the daily physio and cathing schedule my life is surprisingly normal and drama free relatively speaking. We decided not to do clinic appointments instead we see her medical team on a as and when needed basis.


  14. My son is 3 months old and was born with L4/5. This post is very helpful, thank you

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