Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 Hi Cherie, mmm, so am I to an extent. THere is absolutely no history of spinal problems in our family, so I had to be the one with the short straw + the tethered cord (i.e. as well as SBO). However, being philosophical here, it has taught me an awful lot (medical knowledge, tolerance, pain management etc) and in a way I feel almost lucky to have it - that sounds daft, but still..... I have told my sister that if she ever gets pregnant she will have to take the extra folic acid. She understands this but I would hope that she would be OK Best wishes Nina --- Begin Forwarded Message --- Date: Fri, 7 Mar 2003 22:42:45 +1100 Subject: Re: SBO discussions Sender: Cherie Devries To: tetheredspinalcord <tetheredspinalcord > Reply-To: tetheredspinalcord Message-ID: <002901c2e49e$bcab3de0$ca56fea9@cherie> Hi Nina, At one stage it was a common thought that SB had a tendency to come out in third generation. So with that it would be that my children's children could have SB. I have SBO / Tethered to a lipoma and even though I was symptomatic from a young age it was never diagnosed as that. So my condition had really set in by the time it was diagnosed. Mine was called Polio in the first place. Shortly after my TCS was diagnosed my daughter had a mri done to see if she had any problems with her spine. Hers is fine. My son does the head in the sand bit, to a degree but his wife does take folic acid. My daughter informed him that he should take it as but he stuck his head in the sand. I guess I'm one in a thousand who slipped through the net. Cherie > Dear all, > > going back to the confusions over SBO alone, SBO with tethered cord, > open or closed SBO, I have just re-read the UK Asbah site definitions > of the condition, written by Mr Ian Pople, neurosurgeon at Frenchay > Hospital, Bristol, UK, as below. This may help to clear up some > confusions!: > > 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. If these are positioned above the level of the buttocks and in > the midline (centrally) there may well be a significant underlying > spina bifida occulta. A dimple or sinus that is below the level of the > buttocks is usually innocent and does not usually indicate an > underlying spina bifida occulta. > > For people with spina bifida occulta, there may be associated > difficulties which may include: 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 > risk, higher than in 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 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). > > Reduce the risk of having a baby with spina bifida > The non-significant form of spina bifida occulta carries no more risk > of having children with spina bifida than that for the general > population. However, the Government recommends that all women of > childbearing age take a daily supplement of 0.4mg of folic acid for one > month before conception and for the first three months of pregnancy as > well as eating a diet rich in folic acid. This is because in the > majority of cases, where a baby is born with spina bifida, there is no > family history of the disability. > > For those with the more complicated spina bifida occulta, and therefore > an increased risk of having children with spina bifida, it is necessary > to take a higher daily dose of folic acid for the same period. This 5mg > tablet is available only on prescription. > > 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 geneticist who will consider both > the family history and individual medical circumstances and advise on > the risk of having a baby with spina bifida. > > > > Not Medical Advice. We Are Not Doctors. Need help with the list? 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Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 Hi Cherie, mmm, so am I to an extent. THere is absolutely no history of spinal problems in our family, so I had to be the one with the short straw + the tethered cord (i.e. as well as SBO). However, being philosophical here, it has taught me an awful lot (medical knowledge, tolerance, pain management etc) and in a way I feel almost lucky to have it - that sounds daft, but still..... I have told my sister that if she ever gets pregnant she will have to take the extra folic acid. She understands this but I would hope that she would be OK Best wishes Nina --- Begin Forwarded Message --- Date: Fri, 7 Mar 2003 22:42:45 +1100 Subject: Re: SBO discussions Sender: Cherie Devries To: tetheredspinalcord <tetheredspinalcord > Reply-To: tetheredspinalcord Message-ID: <002901c2e49e$bcab3de0$ca56fea9@cherie> Hi Nina, At one stage it was a common thought that SB had a tendency to come out in third generation. So with that it would be that my children's children could have SB. I have SBO / Tethered to a lipoma and even though I was symptomatic from a young age it was never diagnosed as that. So my condition had really set in by the time it was diagnosed. Mine was called Polio in the first place. Shortly after my TCS was diagnosed my daughter had a mri done to see if she had any problems with her spine. Hers is fine. My son does the head in the sand bit, to a degree but his wife does take folic acid. My daughter informed him that he should take it as but he stuck his head in the sand. I guess I'm one in a thousand who slipped through the net. Cherie > Dear all, > > going back to the confusions over SBO alone, SBO with tethered cord, > open or closed SBO, I have just re-read the UK Asbah site definitions > of the condition, written by Mr Ian Pople, neurosurgeon at Frenchay > Hospital, Bristol, UK, as below. This may help to clear up some > confusions!: > > 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. If these are positioned above the level of the buttocks and in > the midline (centrally) there may well be a significant underlying > spina bifida occulta. A dimple or sinus that is below the level of the > buttocks is usually innocent and does not usually indicate an > underlying spina bifida occulta. > > For people with spina bifida occulta, there may be associated > difficulties which may include: 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 > risk, higher than in 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 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). > > Reduce the risk of having a baby with spina bifida > The non-significant form of spina bifida occulta carries no more risk > of having children with spina bifida than that for the general > population. However, the Government recommends that all women of > childbearing age take a daily supplement of 0.4mg of folic acid for one > month before conception and for the first three months of pregnancy as > well as eating a diet rich in folic acid. This is because in the > majority of cases, where a baby is born with spina bifida, there is no > family history of the disability. > > For those with the more complicated spina bifida occulta, and therefore > an increased risk of having children with spina bifida, it is necessary > to take a higher daily dose of folic acid for the same period. This 5mg > tablet is available only on prescription. > > 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 geneticist who will consider both > the family history and individual medical circumstances and advise on > the risk of having a baby with spina bifida. > > > > Not Medical Advice. We Are Not Doctors. Need help with the list? Email kathy@...,michelle@..., rick@... Quote Link to comment Share on other sites More sharing options...
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