Page 1 of 2 12 LastLast
Results 1 to 10 of 17
  1. #1
    Join Date
    Sep 2007
    Location
    NW, Ohio, USA
    Posts
    143

    Default Types of Spina Bifida

    Spina Bifida Occulta


    This is a mild form of spina bifida which is very common. Estimates vary but between 5% and 10% of people may have spina bifida occulta. It must be emphasised that, for the vast majority of those affected, having spina bifida occulta is of no consequence whatsoever. Often people only become aware that they have spina bifida occulta after having a back x-ray for an unrelated problem. However, for a few (about 1 in 1,000) there can be associated problems.

    Why do some people have complications?

    The term 'spina bifida occulta' is, in fact, not one but two separate conditions which have completely different consequences. This leads to confusion when such a diagnosis is used without qualification.
    For the majority of people with spina bifida occulta it is a minor fault involving one vertebra in the lower back. The unfortunate use of this term for such a minor fault can lead to distress for the person concerned. However, it should be considered as insignificant, both for that person and his or her children.
    For a small number of people with spina bifida occulta the fault is more extensive. Either the split in the spine is bigger, or may involve two or more vertebrae. There may be visible signs on the skin such as a mole or naevus (birthmark), a dimple or sinus (hole), or a patch of hair. This type of spina bifida occulta is significant.

    There may be associated difficulties which may include the following: foot deformity, weakness and reduced sensation of the legs, change in hand function, bladder infections and incontinence and bowel problems.
    These problems arise because the spinal cord becomes tethered to the backbone. Often a child who is previously symptomless may experience difficulties during the rapid growth of adolescence. This is because the nerves of the spinal cord are stretched and the symptoms may become progressively worse.

    It is important to consult a GP, who, if appropriate, can refer to a neurosurgeon. Specialist scanning procedures such as MRI (magnetic resonance imaging) give a clear picture of the nerves and spinal column and the neurologist will be able to advise on the most appropriate treatment.

    People with spina bifida occulta and progressive (worsening) symptoms of a stretched or tethered spinal cord need to have an operation on their lower spine to release the tension in the spinal cord. This is often a fairly simple and effective procedure, but occasionally the operation is very complicated and involves a (2% - 5%) risk of failure. It is often possible to improve symptoms in the legs with this operation, but it is rare for bladder function to return to normal. The main purpose of a "detethering operation" is to stop any further deterioration in leg or bladder function and it is important that a neurosurgical assessment is made as early as possible after the onset of symptoms. The operation is probably best done by those neurosurgeons who have a special interest in the condition.


    What are the implications?

    For the vast majority of people with the non-significant form of spina bifida occulta there are no known complications and there is no higher risk of having children with spina bifida than there is in the general population.
    For those with the more complicated spina bifida occulta, there may be neurological problems which may or may not be present at birth and may be progressive. Those with significant spina bifida occulta have a higher risk, than the general population, of having children with spina bifida which could be cystica or occulta. This risk is between 2% and 4% and is the same risk that those with with spina bifida cystica have of passing on the disability.
    However, the risk of having a baby with spina bifida can be dramatically reduced by taking folic acid (a B-group vitamin).

    More information and advice

    If someone suspects that they have occult spina bifida and is experiencing any of the problems described above, they should ask their GP for referral to a neurologist who can investigate and advise about treatment. Women who know they have spina bifida occulta and are planning to have a baby can ask for a referral to a genetic who will consider both the family history and individual medical circumstances and advise on the risk of having a baby with spina bifida.


    Spina Bifida Cystica (cyst-like)

    The visible signs are a sac or cyst, rather like a large blister on the back, covered by a thin layer of skin.

    There are two forms:


    Meningocele

    In this form, the sac contains tissues which cover the spinal cord (meninges) and cerebro-spinal fluid. This fluid bathes and protects the brain and spinal cord. The nerves are not usually badly damaged and are able to function, therefore there is often little disability present. This is the least common form.


    Myelomeningocele (meningomyelocele)

    This is the commoner of the two meningoceles and also the most serious. Here the sac or cyst not only contains tissue and cerebro-spinal fluid but also nerves and part of the spinal cord. The spinal cord is damaged or not properly developed. As a result, there is always some degree of paralysis and loss of sensation below the damaged vertebrae. The amount of disability depends very much on where the spina bifida is and the amount of nerve damage involved. Many children and adults with this condition experience problems with bowel and bladder control.

    Cranium Bifida

    Here the bones of the skull fail to develop properly. The sac which forms is known as encephalocele. It may contain tissue and cerebro-spinal fluid only. However, in some cases, part of the brain may also be present in the sac resulting in brain damage. The most severe forms of cranium bifida are iniencephaly and anencephaly. Here, the brain does not develop properly or is absent, and the baby is either stillborn or dies shortly after birth.
    Most babies born with spina bifida also have hydrocephalus (from the Greek hydro = water, cephalie = brain).

    http://www.fortunecity.com/millenium...ton/268/sb.htm

  2. #2
    Join Date
    Sep 2009
    Location
    Norfolk, England
    Posts
    240
    Blog Entries
    3

    Default Spina bifida?

    I have no idea what form of sb I have, in fact for many years the doctors would not enter into a discussion with me about my back. Being now 75years old in the good old days "we" were not allowed to know, and was quite amazed when I eventually found out by my own investigations. Having said all that I have been quite active most of my life, playing badminton, swimming and lastly for a number years - linedancing. However, my back is now extremely painful and cannot sit for long periods. The evidence on my back is a huge bulbous scar which apparently was the result of the surgeon closing the gap, so to speak.So along with a very curved spine which has now an arthritic complication, plus spondilosis, does not make for a very happy bunny at the best of times! Any comments would be appreciated.
    I know I've not been too badly off compared to a lot of folk, so please don't get me wrong.

  3. #3
    Join Date
    Sep 2008
    Location
    Nashville, TN
    Posts
    4,441

    Default

    Hi, Emm! Welcome. What part of the world do you live in? (We have folks from all over).

  4. #4
    Join Date
    Sep 2009
    Location
    Norfolk, England
    Posts
    240
    Blog Entries
    3

    Default Where I live

    I'm a Norfolk born and bred person although I've travelled around somewhat for several years, but only in England and Ireland. After my other half decided to vamoose - hooray - I moved about 14 times in 5 years.Great adventures and many friends along the way. Unfortunately I'm not very good at sustaining lasting friendships, didn't have the training in a close family situation to fall back on.
    Let me know more about you. I've always wanted to go to the Grand Ole Oprey being a fanatical C & W music lover.
    Look forward to hearing from you.

  5. #5
    Join Date
    Aug 2009
    Location
    N California
    Posts
    12

    Default

    Emm, 75 how Cool is that - Iím 60 and also have no idea what form of SB I have. If youíre up to it, you should make a trip to TN - you wonít believe how friendly everyone is there.

  6. #6
    Join Date
    Oct 2008
    Location
    Canada
    Posts
    1,444

    Default

    Hi Emm,a big welcome to you too.Wow 75 eh! That is cool!I'm going to be 53 and I'm not sure what type of Spina Bifida I have either.All I know is I had a big lump at the top of my butt and if you touched me there I'd drop to the floor and not be able to walk for a few hours or so.That got removed at the age of around 16.I had a curly spine too and they put in two steel rods to straighten me out which worked out well until one broke and got me to an early retirement.I'm still reasonably active,but have been slowing up some cause the back ain't what it used to be.

    Nice to have you here!

    Gymp
    I think,I think I am,therefore I am,I think.
    (Moody Blues "In the Beginning")

  7. #7
    Join Date
    Jan 2008
    Location
    South Africa
    Posts
    6,112

    Default

    Hi Emm
    Welcome!
    (Sorry I'm coming to this thread so late.)
    Roger
    Sumus semper in excretum sed alta variat!

  8. #8
    Join Date
    Nov 2007
    Location
    San Diego
    Posts
    501

    Default

    Quote Originally Posted by Holly View Post
    Spina Bifida Occulta



    Spina Bifida Cystica (cyst-like)

    The visible signs are a sac or cyst, rather like a large blister on the back, covered by a thin layer of skin.

    There are two forms:


    Meningocele

    In this form, the sac contains tissues which cover the spinal cord (meninges) and cerebro-spinal fluid. This fluid bathes and protects the brain and spinal cord. The nerves are not usually badly damaged and are able to function, therefore there is often little disability present. This is the least common form.


    Myelomeningocele (meningomyelocele)

    This is the commoner of the two meningoceles and also the most serious. Here the sac or cyst not only contains tissue and cerebro-spinal fluid but also nerves and part of the spinal cord. The spinal cord is damaged or not properly developed. As a result, there is always some degree of paralysis and loss of sensation below the damaged vertebrae. The amount of disability depends very much on where the spina bifida is and the amount of nerve damage involved. Many children and adults with this condition experience problems with bowel and bladder control.

    http://www.fortunecity.com/millenium...ton/268/sb.htm
    Very interesting writeup, and it solved what has puzzled me recently: Only in the past year have I heard the term "cystica", and I thought it was just a synonym of myelomeningocele. But according to the above quoted text, it's an umbrella under which meningocele and myelomeningocele fall.

    Never even knew that (I am myelo, btw)

  9. #9
    Join Date
    Aug 2008
    Location
    Norfolk, England
    Posts
    464

    Default

    Emm, nice to see a fellow Norfolk Dumpling here! Whereabouts are you from? I'm in Coltishall although I grew up in Norwich

    Sounds like you had an open form of SB - mine is SBO, so I had no open lesion. I do, however, have a very ugly scar from surgery when I was 3 to detether my spine by removing a bony spur that was wedged in between my split spinal cord (called Disatematomyelia). I can see how things might have been 'hidden' from you when you were a child, as things were done very differently back then - the doctor was 'king' and no one questioned him at all. To be honest, i'm only 27 and I never really knew that I had SBO - I always knew about the split cord, but all the other stuff was never really explained to me. I don't suppose you could get hold of your medical records, given how long ago they were written, as this is what I did a few years back, and it revealed a lot to me.

    If you're getting symptoms that you think are related to your SB, then your GP really should refer you to a neurosurgeon, regardless of age or weight (which I know is a real hot potato within the NHS right now - a lot of people are being discriminated against because of their weight, and some people aren't even that overweight!). Unfortunately the nearest hospital to Norfolk that has a neurosurgery service is Addenbrooke's in Cambridge (where I was treated as a child), although I think one of the consultants there holds a clinic once a month at the NNUH. Talk to your GP and see if you can be referred.

    With regards to the scoliosis (curved spine), a lot of people with SB and other neural tube disorders develop this and other deformities, and for this and your other bone issues with your spine you'd need to see an orthopadeic specialist. I've been seen by Mr Crawford since my last operation almost 11 years ago, but there are 2 other spine surgeons there who might be able to help you.

  10. #10
    Join Date
    Sep 2008
    Location
    Nashville, TN
    Posts
    4,441

    Default

    Quote Originally Posted by Emm View Post
    Let me know more about you. I've always wanted to go to the Grand Ole Oprey being a fanatical C & W music lover.
    Look forward to hearing from you.
    Sorry I'm just now seeing this. Believe it or not, I've lived in Nashville for 15 years and have never been to the Grand Ole Opry. I'm not a big country fan, although I do like bluegrass; Alison Kraus is a favorite. She's done some crossover music lately that I'm not as keen on. I also rather like Big Band music of the 1940s, but mostly I listen to classical.

    I have lipomyelomeningocele & split cord malformation with sbo (no open lesion at birth) and walk with one crutch and AFO. I'm 45 and a college history professor.

    Lisa


Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •