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.

Vertebrae	Muscle	Function
C1
C2
C3	Diaphragm	Breathing
C4	Diaphragm/ Shoulder	Breathing/Shoulder shrug
C5	Deltoid/ Biceps	Lift arms, sideways/Bend elbow
C6	Wrist extensors	Lift wrist back
C7	Triceps	Straighten elbow
C8	Hands/Fingers	Grip object

Thoracic
T1	Hands/Fingers	Splay fingers apart
T2	Chest (intercostal)	Allow ribcage move/breathe
T3	Chest (intercostal)	Allow ribcage move/breathe
T4	Chest (intercostal)	Allow ribcage move/breathe
T5	Chest (intercostal)	Allow ribcage move/breathe
T6	Chest/ Abdomen	Ribcage move/Cough
T7	Chest/ Abdomen	Ribcage move/Cough
T8	Chest/ Abdomen	Ribcage move/Cough
T9	Abdomen	Cough, balance
T10	Abdomen	Cough, balance
T11	Abdomen	Cough, balance
T12	Abdomen	Cough, balance

Lumbar
L1	Hip	Bends hips
L2	Hip	Bend, flex hip joint
L3	Quadricep/Hip adductors	Straighten leg at knee
L4	Knee/Ankle	Bend ankle, draw foot back (dorsi-flexion)
L5	Ankle/Toe	Lift ankle/Lift big toe

Sacral
S1	Ankle/Toe	Bend ankle/Point toe (plantar flexion)
S2	Toes/Anal, bladder sphincter
S3	Anal, Bladder sphincter
S4	Anal, Bladder sphincter
S5	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	Quadriceps	L2, L3, L4
Flexion of leg at knee	Hamstrings	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.

Abduction

 Adduction

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.

Learning About SB: Working – PT, OT, ST

When talking about the different therapies with spina bifida you use a lot of different letters, PT, OT, ST. Physical therapy, occupational therapy and speech therapy. These are the people that help make children work. These are just a couple of people who are in our healthcare team. We also have the neurosurgeon, paediatrician, developmental paediatrician, development worker, social work, urologist, family doctor and I’m sure we will add to this team as Nick gets older. Usually there is also an orthopaedic surgeon, but Nickolas luckily didn’t have any problems (I don’t want to say yet, so I’ll just leave it at that).

I am not going into everyone on the healthcare team, just the T’s, the therapists. So, we have PT, OT and ST, our own little T team.

Physical therapy works the big muscles. They help with the walking, they deal with mobility devices and they are the ones to make kids cry. That is what Nick’s PT always jokes about, that PT always makes kids cry. But that is how we know they are working. There seems to be a running joke between PT and OT. Who the kids like more.

Occupational therapy works in small muscles, the little things like holding a pencil and holding things, working on the hands. Occupational therapy deals with life skills and helps to work toward independence. Speech therapy works on, well, speech and language development. These kids are at risk because of everything that life has thrown at them so far. Between anaesthesia and operations at such an early age, let alone hydrocephalus and Chiari malformation.

Speech therapy is actually something we have Katheryn in right now. So even though Nickolas is talking up a storm, we still can’t escape ST.

An article that I found said that success or failure of PT depends on the ability of the therapist to teach and encourage the parents to help their child to become as independent as possible in daily life (Hewson, 1976). I didn’t realize how old this was, but I actually like this, at this age it isn’t about making a child do something. It is teaching the parent how to encourage their child with exercises and stretching. Physio involves building strength and muscle. It is creating the building blocks and then just making the castle bigger and bigger. We are building the foundation. Right now that is trunk control.

Using a yoga ball and Nickolas’ corner chair are 2 things that we are using to help with physio. We haven’t done anything with OT yet; I think once he gets older they will get more involved. And as for speech, he is right where he is supposed to be. And that is really a nice thing to be able to write.

This is going to be my last educational module. I think it is #9. Too bad I couldn’t get to 10, but maybe next year. I wrote them through the month of June to celebrate and educate about spina bifida month. I’ve learned a lot in writing them and researching them, and finding all the pictures that I love putting up.


I’m thinking that I’m going to move them to a different page, just to clear things up a bit. If anyone has any suggestions about other topics to cover, or something they were interested in. Please, please let me know and I’ll look into it. This has actually been pretty fun. I’m hoping to transform these into a PowerPoint presentation that I can show people/classes. I can work on my little circle of people to make spina bifida a household name, and hopefully if one person understands it a bit more, and is less afraid when they get the diagnosis, then I have succeeded in what I’ve wanted to do.


So I hope you enjoyed!

Hewson, J.E. (1976). Basic physiotherapy of spina bifida. Dev Med Child Neurol Suppl, 37, 117-118.