Welcome to the Spina Bifida Resource Center! Helpful videos by medical professionals, in-depth articles and clarity about SB are the useful things you’ll find here. In addition, you’ll find state specific information such as local clinics, charities, camps for children and more. We have everything you need to make your life easier as you begin to learn more about SB.
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Short & Long Term Spina Bifida Effects
Patients with Spina Bifida (SB) will experience a range of different health complications and issues, but open SB (where the spinal cord is exposed) tends to be a more complicated form of the disability. There are 15 different Spina Bifida long term effects which are listed and described below (along with their sources):
Aging Spina Bifida effects
Aging decreases the central nervous system efficacy and increases the risk of osteoporosis (porous bones- weak bones) and osteoarithritis (degenerative disease of the joints). One Spina Bifida long term effect is developing one or more of these conditions earlier and with more severity.
Another Spina Bifida long term effect which is more common in adults than children is more pain in their joints (as they get older) which can be due to joint stress, muscle pain or arthritis. If this condition occurs, a proper treatment program should be followed.
Urine and Kidney Long Term Effects of Spina Bifida
Another Spina Bifida long term effects are urinary and kidney problems. Patients will require lifelong antibiotics to prevent infection. The rate of renal failure has declined significantly since the introduction of CIC (clean intermittent catheterization), but this complication may still occur. Patients who undergo bladder augmentation need to be followed closely for their whole lives for any signs of cancer, problems with mucus or kidney stones.
Most of the difficulties associated with bowels are related more to behavior than to the level of the SB defect. Constipation is the most common problem Spina Bifida effect. With increasing age, the risk of megacolon (abnormally distended large intestine) and rectal carcinoma increases. All of these problems need to be addressed as early as possible otherwise the life expectancy and quality of life may be affected negatively.
SB does not appear to affect the woman’s ability to become pregnant. Although the evidence is imaginary, it seems that SB can complicate pregnancy. Most of the difficulties disappear when the pregnancy is over. Some studies show that patients lose mobility and are unable to regain it after the pregnancy is over. Therefore, such patients should consult their doctor and take strengthening levels of folic acid prior to pregnancy since they are at higher risk of having a child with the same disability that they have.
Respiratory problems is another Spina Bifida effect. There are two types of lung diseases: obstructive and restricted. Obstructive refers to “something is blocking the breathing” such as in sleep apnea. Restrictive lung disease refers to “the inability of the lungs to fully expand when taking a breath” which can be caused by conditions like scoliosis, structural defects, or even the weakness of the abdominal or chest wall muscles. Adults with SB who snore, feel tired or have to take naps during the day should see the physician for an evaluation. Those with SB need to be aware that respiratory problems is a long term Spina Bifida effect that should be consulted with by a doctor.
Premature arthritis is often a common long term Spina Bifida effect, especially for those who use their shoulders to ambulate. Knees are also prone to arthritis, particularly in adults with an abnormal gait who do not use crutches. Scoliosis (the patient’s curve from side to side) can progress in adulthood if it was not fused in adolescence. Orthopedic problems may be due to:
Pressure and abrasion
Spina Bifida effects like Skin breakdowns can cause bone infections, especially at the heel or toes. These infections may be difficult to heal due to the poor immunity of patients with SB. Therefore, these individuals need to have good hygiene and regular feet examination to avoid any morbidity.
Almost three-quarters of the patients with SB have been reported to be allergic to latex or natural rubber. While researchers still do not completely understand why this allergy is so high in SB patients, some experts believe that such an allergy can be due to frequent exposure to latex is an unfortunate Spina Bifida effect.
Risk factors for hypertension are increased in adulthood Spina Bifida effects. Blood pressure should be monitored closely. If blood pressure goes beyond 140/90 mmHg, the urologist should be consulted for a renal assessment and steps need to be taken to keep the blood pressure within normal limits.
Obesity is a major health problem in the general population all over the world; however, it is even more common in adults with SB. This spina bifida long term effect have decreased their mobility and they spend more time in wheelchairs. Those who can walk often tend to walk less as their age increases. Exercise is not up to the mark. All these factors increase weight gain, leading to obesity. Therefore, proper exercise and diet is needed to avoid this complication.
Some research studies show that substance abuse is higher in adults than in the general population. If this is the case, they may be using drugs as self-medication for pain, depression, or for any of a number of other conditions. This is an indirect Spina Bifida long term effect (not directly related to SB).
A shunt may block at any time even if it has been working normally for a long time is a long term Spina Bifida effect. Such patients can have issues with slow thinking, problems in speaking and more hesitancy in general behavior. They can be easily missed by the neurosurgeon if the blockage is of shorter duration.
Chiari Brain Stem Compression
When the shunt failure occurs it increases the pressure in the brain which pushes the skull down into the cervical spine leading to Chiari brain stem compression. The patients with this malformation may present with a weak voice, pneumonia, sleep apnea or loss of respiratory drive, difficulty in swallowing, difficulty with vocal cords and sometimes eye problems as well. Therefore, if these symptoms present the suspicion of Chiari brain stem compression shunt should be considered.
Spinal Cord Tethering
Spinal cord tethering is a Spina Bifida effect that can occur at any time and any age. It occurs more likely if there has been a previous tethering and de-tethering, which may have created scarring. Tethering can present with skin sores, orthopedic changes, such as the foot starting to turn out, or scoliosis that progresses fairly quickly.
Additionally, some patients with open SB may experience more physical and psychological conditions.
Through our content we want to empower the lives of people with SB and to promote the prevention of it through education, public awareness and research. Working together with local organizations we aim to enhance the lives of those who are affected with SB. We want to build a stronger community and create a better future for those with SB.