Spina Bifida Occulta

Spina bifida occulta is also one of the more mild forms of spina bifida that as many as 10 to 20 percent of people may have it. It is usually only found in people once they have an x-ray taken. 

There are different forms of even just spina bifida occulta that can cause problems though these include:

- A spinal cord that is tethered to a benign fatty tumor 

- The end of the spinal cord being too thick

- A fatty lump at the inside end of the spinal cord 

- The spinal cord is split in two...usually by a bone or cartilage

- The spinal canal and the back are connected by a piece of tissue

Signs/symptoms of Spina Bifida Occulta:

(A lot of these problems can occur in people that don't have spine issues as well)

- pain in back or legs

- weakness in legs

- numbness or other changes in feelings in the back or legs

- deformed legs, feet, and/or back

- change in bladder and/or bowel functions

Eighty percent of people with spina bifida occulta will have a superficial sign of having it, such as:

- a hairy patch

- a fatty lump

- a red or purple spot (made up of blood vessles)

- a dark spot of birth mark on their back

- a deep dimple

- an area with less skin color

For all of the information gathered I used the terms that I would understand, they all have their special names, but I thought I would only include the things that made sense to me. 

Information gathered from: http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8277205/

Interview of Someone with OSD

Since OSD is an inside deformity it can be sometimes hard for doctors to detect, even with an x-ray. To review the basics of Occult Spinal Dysraphism see my previous blog post.

Gehnnah shared her story of having OSD and her hope for parents who may question if their children have the handicap:

I am 34 years old and was diagnosed on 5/10/12 with spina bifida occulta. I have always had a dimple on my lower back just above the buttox and I have always had lower back pain. My parents unfortunately didn't notice the dimple and for the most part thought that as a kid being outside and playing it'd be normal for me to complain of pain. When I was 12 my mom took me to a doctor for xrays and the doctor told her I needed to see a specialist. She was not able to afford it because my parents had divorced and therefore I have waited suffering in pain my entire life where many occasions of temporary paralysis did occur. I not only have spina bifida occulta, but degenerative arthritis in the thoracic region of my spine accompanied with mild scoliosis. I see a rheumatologist on Tuesday. I hope I have shed some light on some who have seen dimples or abnormalities on their children. They say most will not have symptoms of spins bifida occulta because it's the mildest form of spina bifida but I must say I do not wish the constant pain I feel on anyone ever.

Occult Spinal Dysraphism

Occult spinal dysraphism (OSD) comes with mild symptoms. This form of spina bifida is a closed type where the spinal nerves and or meninges are mixed up in some way with their surrounding structures and this involvement causes complications. This form of spina bifida can be hard to detect and not always has clear complications. This is why it is unclear how many people have it. There is an estimation of 1 in 250 people to 1 in 5,000 people. As science reveals more things this estimation may become more precise.

These are the signs of OSD:
As many as 80% of people with OSD have at least one of these outward signs or herald marks. The signs include:

• A hairy patch in the middle of the lower back
• A fatty lump over the bottom of the spine
• A stork bite or haemangioma (a reddish or purple spot) on the skin
• A dimple or sinus (hole) above the level of the crease in the buttocks (Dimples below the level of the crease are common in newborns and are usually no cause for alarm)
• A pigmented area or birthmark over the bottom of the spine.
• A small tail

OSD can be very complex because it is not just one condition. It represents a number of conditions which can occur separately or in combination. Some of these conditions are:

• A tethered spinal cord where the lower end of the spinal cord is stuck or attached to surrounding bone or other structures. The spinal cord is usually free (to some extent) to move up and down within the spinal canal.
• A lipoma which is a fatty lump whose tissues are often interwoven with those of the spinal cord, making them very difficult to separate. Lipomas can also tether the spinal cord.
• Diastematomyelia where the spinal cord is split in two usually by a piece of abnormal bone or cartilage. This can also tether the spinal cord.
• A dermal sinus which is a connection between the spinal canal and the skin of the back.

All of these conditions can affect the functioning of the spinal cord i.e. its ability to send messages to and from the brain. The cord can become stretched which causes pain and the blood supply to the cells in the spinal cord can be affected with the result that the nerves lose their ability to function properly.

These are complications of people with OSD:
Not everyone with OSD will have complications. Sometimes the onset of signs and symptoms will be so gradual that they may not appear until adulthood. For most though, there will be some indications early in the person’s life that the nerves in the spine are not working as they should.
Some of these are:

• Foot deformity
• Weakness in the legs
• Reduced feeling or numbness in the legs or feet
• Back or leg pain
• Bladder infections
• Bladder incontinence
• Constipation
• Scoliosis or other orthopedic deformities.

All of these symptoms can be caused by conditions other than OSD so it is important to see your doctor for thorough testing and an accurate diagnosis.
It is especially important to seek medical advice where the symptoms are progressing or getting worse. These changes may indicate that the spinal cord is tethered and an operation to untether the cord might be required.

Prevention:
There is no guaranteed prevention, but is has been shown that taking enough folic acid can reduce the risk of neural tube defects in baby by 70%. To help prevent OSD it is recommended to have enough folic acid in your diet one month before conception and all through out pregnancy. The recommended amount is .5 milligrams a day. If  history of neural tube defects is found in either the mother or father's history then it is recommended to have a larger dosage of 4 milligrams a day.

Information for this blog page was received from: http://www.mydr.com.au/babies-pregnancy/spina-bifida-occulta

and also from: Spina Bifida Hydrocephalus Queensland. Spina Bifida Occulta. July 2010. http://spinabifida.org/wp-content/uploads/2010/12/SBO-Booklet.pdf

What is spina bifida?

The definition of spina bifida is "a congenital defect of the spine in which part of the spinal cord and its meninges are exposed through a gap in the backbone. It often causes paralysis of the lower limbs, and sometimes mental handicap." (google dictionary) I think it is the weirdest thing, every time I write the words "spina bifida" my computer underlines them in red like I wrote them wrong. I mean, this is something real, it should be saved into the computer writing software or whatever haha.

The Spina Bifida Association (SBA) has a lot of valuable information for me and a whole page on what spina bifida is.

- It is the most common permanently disabling birth defect in the US.

- It happens while baby is in the womb. The babies spinal column does not close all of the way.

- There is not a clear answer of what causes spina bifida. So far the hypothesis is that it is both a combination of genetic and environmental factors that lead to someone being born with spina bifida.

The SBA also answers another one of my questions of...are there different degrees/forms of spina bifida?

Occult Spinal Dysraphism (OSD)
Infants with this have a dimple in their lower back. Because most babies with dimples do not have OSD, a doctor has to check using special tools and tests to be sure. Other signs are red marks, hyper-pigmented patches on the back, tufts of hair or small lumps. In OSD, the spinal cord may not grow the right way and can cause serious problems as a child grows up. Infants who might have OSD should be seen by a doctor, who will recommend tests.

Spina Bifida Occulta
It is often called “hidden Spina Bifida” because about 15 percent of healthy people have it and do not know it. Spina Bifida Occulta usually does not cause harm, and has no visible signs. The spinal cord and nerves are usually fine. People find out they have it after having an X-ray of their back. It is considered an incidental finding because the X-Ray is normally done for other reasons. However, in a small group of people with SBO, pain and neurological symptoms may occur. Tethered cord can be an insidious complication that requires investigation by a neurosurgeon.

Meningocele
A meningocele causes part of the spinal cord to come through the spine like a sac that is pushed out. Nerve fluid is in the sac, and there is usually no nerve damage. Individuals with this condition may have minor disabilities.

Myelomeningocele (Meningomyelocele), also called Spina Bifida Cystica
This is the most severe form of Spina Bifida. It happens when parts of the spinal cord and nerves come through the open part of the spine. It causes nerve damage and other disabilities. Seventy to ninety percent of children with this condition also have too much fluid on their brains. This happens because fluid that protects the brain and spinal cord is unable to drain like it should. The fluid builds up, causing pressure and swelling. Without treatment, a person’s head grows too big, and may have brain damage. Children who do not have Spina Bifida can also have this problem, so parents need to check with a doctor.

above is an illustration of three of the different types of spina bifida from bodydiesease.com

above is one of the less graphic pictures of what spina bifida looks like at birth.

Purpose of Blog

My mom has spina bifida and I feel I should know many things that I have no idea about. For my Exceptional Student: P- Grade 6 I have to do a Higher, Wider, Deeper project. I am going to explore spina bifida, which all I know (or think I know) is that it is a twist in the spine and babies are born with it. I obviously need to learn more about it.
How exactly does one come to have spina bifida? What exactly is spina bifida?
Are there different levels of it?
Are there special things people with spina bifida have to do to take care of themselves?
Do people with spina bifida have a lower life expectancy?
Do people with this disability ever also have mental disabilities?
What is this prenatal surgery I have heard of and can babies now be healed of spina bifida?
Does the government help out with the financial strain of this medical condition?
How does this disability affect families?
How does this disability affect individuals with spina bifida?

I really am interested in all of these questions. Over the next few weeks I'll research the topic and share my findings in my blog with you!