Our FAQs are grouped by topic related to Spina Bifida. Don’t see the answers to your questions? You can submit medical and social questions to SBA’s Ask the Expert feature, and we will do our best to find you answers.
- Adult Care
- Bladder Augmentation
- Chronic Diseases
- Cognitive Function
- Health and Fitness
- Latex Allergy
- Precocious Puberty
- Risk, Prevention, & Treatment
- Soft Tissue (Overuse) Injury
- Spina Bifida Occulta
- Tethered Cord
Q: I am 18 years old and need to find a doctor. What do I do?
A: You are now legally an adult and will be able to make your own decisions about your health care. In searching for adult-oriented doctors, there are some things to consider: Everyone should have a primary care physician to go to with common illnesses that anyone can get, as well as health maintenance care like immunizations, cholesterol screening, and blood pressure checks. For you, the best type of primary care adult medicine doctor is most likely a family medicine physician because they are familiar with Spina Bifida. You need a urologist who treats neurogenic bladders and, if you have a shunt, a neurosurgeon. As an adult, since you have stopped growing, you are less likely to need frequent care by an orthopedic surgeon or to have new bone issues requiring surgery. However, you would benefit from a physical medicine and rehabilitation specialist (also known as a physiatrist) who can help with musculoskeletal issues, as well as with bracing, wheelchair, and other equipment assessments. A physiatrist can also help with physical therapy and occupational therapy referrals, if needed. They can also help you find an orthopedist if a surgical issue arises. If you are a woman and are contemplating having children, it is best to discuss all of the issues of a potential pregnancy with an obstetrician who specializes in high-risk deliveries. You should meet with this sub-specialty obstetrician before you become pregnant.
Q: Augmentation surgery, which occurs when part of the colon is removed and attached to the bladder to increase urine storage capacity and reduce bladder pressure, has been recommended for my 11- year-old daughter. Can you provide more information about the surgery?
A: Bladder augmentation is a major surgery that should not be undertaken lightly. However, this surgery protects the kidneys, preserves renal function, and makes it possible to stay dry between catheterizations in many children with Spina Bifida. Before resorting to surgical enlargement of the bladder though, clean intermittent catheterization and medication should be utilized. If those measures are not effective in reducing the bladder pressure, then bladder augmentation is a wise choice. However, once a bladder has been surgically enlarged (augmented), a strict catheterization program is necessary to prevent overfilling of the bladder; Overfilling of the bladder increases risk of leaking, bladder rupture, and bladder cancer. You should share specific questions and concerns with your child’s urologist. For more information, review SBA’s health information sheet on urologic care and management.
Q: Are people with Spina Bifida at higher risk of developing type 2 diabetes?
A: People with Spina Bifida who have any of the following risk factors are at higher risk for developing type 2 diabetes:
- Obesity: People who are overweight, especially those whose fat settles in the abdomen rather than the legs and hips, are at high risk for insulin resistance and diabetes. At least 50% of children and adults with Spina Bifida are obese, putting them at very high risk for diabetes in their life.
- Inactivity/immobility: Increased exercise helps to maintain a healthy weight. Furthermore, exercise burns glucose for energy, increasing the cells’ ability to use the insulin. There are many options for exercise for people with Spina Bifida, both those who can walk and for those who have difficulty with walking or use a wheelchair.
- Family history: Hispanics, American Indians, Asian Americans, and African Americans are the highest risk groups for type 2 diabetes. However, any family history of diabetes should be shared with your physician.
- Personal history of pre-diabetes or gestational diabetes (diabetes during pregnancy).
- Age: Risk increases with age. People over the age of 45 are considered high risk. However, insulin resistance and type 2 diabetes is increasing among children and adolescents. This increase is attributed to obesity, poor nutrition and lack of exercise. To decrease your risk, eat nutritious meals and maintain a healthy weight
Q: Are people with Spina Bifida at increased risk of getting osteoporosis?
A: 50% of people with Spina Bifida get osteoporosis, and research shows they get it much younger than the general population. Children and adults with repaired myelomeningocele have lower bone density in their lumbar spine and in their hips (greater trochanter) than the general population. This is true for both those who ambulate and those who use wheelchairs, but seems to be greater for those who do not ambulate. Decreased bone density may also be due to medical conditions, medications or surgeries. To learn about the risks and preventive measures, please review SBA’s health information sheet on osteoporosis.
Q: I am 21 years old and obese. Should I be worried about increased risk of health problems?
A: Obesity has been linked to high blood pressure, diabetes, osteoarthritis, abnormal cholesterol metabolism, heart disease, sleep apnea, and psychological problems.
For people who have Spina Bifida, even more problems are associated with being seriously overweight. For more information, review SBA’s health information sheet on obesity.
Q: Can Spina Bifida be associated with cognitive function issues?
Q: When should I let my child with Spina Bifida catheterize?
A: Transitioning catheter care is a gradual process and depends on the child’s learning profile, hand-eye coordination, fine motor skills, and body habitus. Delays in cognitive or motor skills should be considered when teaching the child to cath, but should not prevent trying. Usually there are phases to learning how to cath. First is learning how to set up for the procedure. Your child can help get the materials together for cathing. Next, your child can help set up the materials for cathing. To get a feel for when your child can help with the actual cleaning, lubricating, insertion, and removal, he or she can practice with a Cheerio. Sometimes, an occupational therapist can assess fine motor skills and design a program for improving the motor skills needed for cathing and/or suggest positional or other adaptations to facilitate access to the urethral area.
Parents and children can use a hand-over-hand technique to begin learning the sequence of motor movements needed in catheterizing. Eventually, the parent can allow the child to cath under supervision. Some children are able to do this by the time they start school, but many are catheterized by the school nurse. Requesting catheterization training as part of the Individualized Education Program is another way to provide opportunities to learn the proper procedure. Some children, particularly girls, may have difficulty with cathing if there are mobility limitations (i.e. spina rods that inhibit bending) or body size issues. In these situations, or whenever catheterization of the urethra is difficult, the family can consider procedures such as the Mitrofanoff. For more information, review SBA’s health information sheets on toilet training and urologic care and management as well as Health Guide for Parents of Children Living with Spina Bifida.
Q: Do you know what type of technology is available that condenses all of my child's medical history so we do not have to pay for films and carry huge files?
A: Because Spina Bifida is such a complex medical condition affecting so many different parts of the body, there is a considerable amount of medical information that rapidly accumulates. Personal health records are now available in many formats.
The National Center for Medical Home Initiatives for Children with Special Health Care Needs has a section on their Web site for creating care notebooks. These notebooks are not Spina Bifida specific, but can be tailored to the family’s needs.
For more guidance about creating a personal health record and for a list of software programs and internet sites that offer free and for purchase personal health records, go the The American Health Information Management Association (www.myPHR.com) and select ” Tools and Resources ” followed by ” PHR Tools and Services “. More information on what to include can also be found in the Health Guide for Parents of Children Living with Spina Bifida.
Q: Is there a technique used at birth to lessen Spina Bifida?
A: Spina Bifida is not caused by anything that occurs during the birthing process. It is a fetal development problem that occurs within the first month of pregnancy, so the fetus will have already developed Spina Bifida before the delivery process. However, there are things the delivery team can do to lessen complications during the birthing process. The optimal delivery team is a high-risk pregnancy specialist with experience managing a Spina Bifida pregnancy. Babies with myelomeningocele, when part of the spinal cord is outside the skin, are usually delivered by C-section to decrease the trauma to the exposed nerve tissue. Once the baby is delivered, she is wrapped in a protective covering and often started on antibiotics to decrease the chance for infection. The baby then goes to surgery to get the exposed nerve tissue covered by a skin layer. These babies are best cared for in intensive care nurseries in hospitals with on-staff neurosurgeons, urologists, and orthopedic doctors who have experience treating newborns with Spina Bifida. If you know you are carrying a baby with this condition, discuss with your obstetrician your options for meeting with these specialists before your baby is born.
For more information, review SBA’s health information sheet on women’s health issues.
Q: Do you have any exercise or safety tips for adults with Spina Bifida who want to become active?
A: You will want to first make sure you are healthy enough to exercise. Inform your physician that you are starting an exercise program. As you choose the right program for you, make sure the activities you choose are varied, fun, and rewarding. Exercise as often as you can, ideally performing strengthening exercises three to four days a week. The National Center on Physical Activity for People with Disabilities(NCPAD) advises that you be active throughout the day – just keep moving.
The Health Guide for Adults Living with Spina Bifida includes a section on physical activity and weight control that is helpful for adults concerned about their general health. This publication is available at SBA’s Marketplace.
Q: My daughter has had symptoms of possible shunt malfunction: vomiting, visual difficulties, muscle numbness and weakness, and back pain. After having MRI and other tests, it seems that the shunt is working properly. In the absence of other evidence, the doctor thinks it may be migraines. Can you provide any insights to help me understand this issue better, including treatment for migraines?
A: There are migraines that can mimic shunt malfunction by causing the same symptoms:
- Basilar-type migraine –Symptoms may include vertigo, double vision and vomiting.
- Sporadic hemiplegic migraine – Symptoms include transient symptoms of hemiparesis and hemisensory changes.
In both of these, the symptoms usually, but not always, precede the occurrence of the headache. Treatment for immediate intense pain associated with migraines is generally ibuprofen, Tylenol or prescription sumatriptan nasal spray. Chronic (long- term) treatment usually involves behavioral strategies (biofeedback, relaxation therapy, etc) and medications – the best studied of these are topiratmate (Topomax), valporic acid, levetiracetam (Keppra) and amitryptyline.
Because shunt malfunction is not always clear-cut, “no improvement” or “worsening” requires re-evaluation by the neurosurgeon and possibly further evaluation of the shunt. In such cases, the patient needs to be in frequent contact with the primary physician or pediatrician and neurosurgeon. For more information, review SBA’s health information sheet on chronic pain.
Q: Are there specific precautions to having a VP shunt such as avoid rolling or hanging upside down or putting pressure on the location of the shunt?
A: This is a question that should really be discussed between a patient and their neurosurgeon. In general terms though, most neurosurgeons feel that non-contact physical activity is safe. A review of the literature found that less than 1% of all shunt problems were attributed to sport-related incidents. The Medical Advisory Board and the Board of Directors of the Hydrocephalus Association have issued a consensus statement encouraging participation in “regular activities including school and after school physical education programs and recreational sporting activities.” This would include usual amounts of tumbling, rolling, and hanging upside down. This would also include non-sustained pressure over the shunt and tubing. For more information, review SBA’s health information sheet on hydrocephalus.
Q: Can you please demystify the rumor as to whether or not those with Spina Bifida and shunts have heightened hearing sensitivity to loud noises when compared to those without Spina Bifida?
A: This is a problem that others with hydrocephalus and shunts also complain about. We do not know exactly how common this is. While it does not affect everyone, it certainly bothers some of those with shunts. There are no studies of treatments for this problem of hyperacusis (oversensitivity to certain frequencies of noise) associated with shunts and hydrocephalus however, there are treatments recommended for the general population. There are audiologists and ENT physicians who specialize in this area and use a desensitization technique also used in tinnitus (a persistent ringing in the ear) called Tinnitus Retraining Therapy. In this therapy, patients listen to a broadband noise at soft levels for a defined period of time each day in order to increase their tolerances to sound. Aside from Tinnitus Retraining Therapy, you can use noise reduction head phones, ear muffs, and ear plugs to decrease the intensity of environmental noise, particularly when you will be in situations where loud noise is common.
Q: I am an adult with Spina Bifida who would like to have eye surgery to correct my near-sightedness. Is it safe for me? I have a VP shunt.
A: Corrective eye surgery is usually an outpatient procedure performed without general anesthesia. Since there is no general anesthesia and the surgery is limited to the cornea of the eye, this surgery is safe for someone with a ventriculoperitoneal (VP) shunt. It is important for everyone to visit an eye doctor on a regular basis. The Health Guide for Adults Living with Spina Bifida includes a section on making doctor’s appointments that is helpful for adults concerned about their general health. This publication is available at SBA’s Marketplace.
Q: Can I go scuba diving with a ventricular shunt?
A: Limited evidence suggests that someone with a ventricular shunt that does not drain into the blood stream can dive safely up to four atmospheres of pressure. This means that those who do not have a shunt that goes to the atrium (a ventriculoatrial or VA shunt) are most likely safe to dive down to 100 feet. This is based on research using decompression tanks (hyperbaric chambers) which showed that the shunts worked normally up to this pressure. The specialists believe that the shunt will drain normally because the brain/ventricles and the abdomen will be equally affected by the increased environmental pressure of the deeper water.
Special considerations include: results of neurologic exam, older shunts may not respond to pressure changes, shunts draining a syrinx have not been tested, shunts to the atrium are affected by blood stream, bowel and bladder surgeries and latex allergy as well as other issues. People with seizure disorders are not allowed to dive.
Q: How can you get health insurance and help paying for medications if you don't qualify for health care coverage any other way?
A: The Social Security Administration has set some guidelines for different disabilities. It is important to view their Web site and discuss your options first with an SSA representative.
- http://www.ssa.gov/disability/ or 1-800-772-1213
Making sense of health care coverage can be confusing. These sites are very informative in making it all easier to understand and navigate:
- Learn how to get insurance. www.covertheuninsured.org/stateguides
- Robert Wood Johnson Foundation www.rwjf.org
These groups can help with obtaining prescription coverage:
- Partnership for Prescription Assistance: 888-4PPA NOW or 888-477-2669; www.pparx.org
- Together Rx Access: 800-250-2839; www.togetherrxaccess.com
- Hill Burton Facilities: 800-638-0742; www.hrsa.gov/hillburton
These sites can help with finding health insurance:
Q: I have heard that some flu vaccines contain latex. Should I avoid getting my flu shot if I am latex sensitive?
A: There are vaccines available that do not contain latex, so risk of latex exposure is not a reason to avoid receiving the flu vaccine. The provider of the vaccine should tell you about latex contamination in the product. For more information, review SBA’s health information sheet on latex allergy as well as SB University.
Q: Is it true that poinsettias can cause an allergic reaction to people who have latex allergy?
A: Up to 40% of latex sensitive people may have a reaction to poinsettias, but the risk of a serious reaction is very low because the latex proteins are not airborne. This means the reaction will only affect the skin, not the airway and blood stream. For more information, review SBA’s health information sheet on latex allergy.
Learn More About Poinsettia and Latex Allergies here.
Q: How can you distinguish between a neurological symptom of Spina Bifida and anxiety?
A: Anxiety can come from internal and external sources. Your neurology team should first make sure the shunt is functioning properly. Afterwards, a mental health specialist can help you identify the sources of your anxiety and help you reduce it, usually through counseling and medication. For more information, review SBA’s health information sheets on depression and anxiety.
Q: Is there such a condition as neurogenic joint?
A: Neurogenic (neuropathic) joints may occur when sensation is diminished, particularly when there is also a chiari malformation or syrinx (cyst). Muscle weakness around the joint also contributes by making the joint less stable and subjects bones to damage in the shoulders hips, knees, and ankles. Talk with your musculoskeletal team (orthopedist, physiatrist, physical therapist, and/or orthotist) about how to minimize stress on your joints. For more information, review SBA’s health information sheet on hip function.
Q: My son is an outstanding athlete but has chronic back pain. Can he be helped?
A: Back pain should always be assessed to rule out a serious problem. This is best done by an MRI. If there is no spinal cord involvement, or treatable spinal problem, you should work with a physical therapist and trainer on back strengthening exercises, proper stretching, and warm up exercises. If the pain persists, consider visiting a sports medicine specialist. For more information, review SBA’s health information sheet on pain.
Q: Are alternative modalities helpful?
A: Chiropractic manipulation and medical massage has been used by people with Spina Bifida, but there is no available information reporting benefits with pain and bladder function. You should let your physician know that you are receiving alternative therapies.
Please inform the treating clinician of the following issues:
- If there is a shunt, be careful with the tubing.
- The Chiari II malformation means that the cerebellum is down into the upper part of the cervical spine and may also be sensitive to rapid head twists.
- The lower spine is not completely fused and therefore not as strong as an intact spine.
- The area under the myelomeningocele repair site may be pressure sensitive and contain a pseudomeningocele (fluid filled sac) which should not be pressed on with significant force.
- The bones in the lower extremities may be thinned (osteopenia).
- The hips may be displaced (particularly if the Spina Bifida is high lumber or thoracic level).
For more information, review SBA’s health information sheet on pain.
Q: Does going through an early and irregular puberty really mean you will stop growing at an earlier age?
A: Although short stature is common in Spina Bifida for many reasons, one concern about precocious puberty is that in addition to premature sexual development, there is premature bone development which causes the growth plates of the bones to mature and fuse early; thereby limiting further growth. For more information, review SBA’s health information sheet on precocious puberty.
Q: My girlfriend is now pregnant and is using M.A.C.E to help her go to the bathroom. She uses glycerin and salt and water. Can this affect the baby?
A: The M.A.C.E. (Malone antegrade colonic enema) procedure has been very useful in helping individuals with Spina Bifida become more continent of stool and have controlled bowel movements. Glycerine is used to help move the stool through the colon and is not absorbed into the body. Therefore, there is no risk to the developing baby. The salt and water will mostly be flushed through the colon with the stool. A small amount will be absorbed into the body, but salt and water are natural to the body and won’t cause any harm.
Q: As a mother-to-be with Spina Bifida what type of delivery should I expect – natural or C-section?
A: The type of delivery depends on multiple physical factors, including:
sensation level, ability to push with pelvic muscles, size of the pelvis, and flexibility around the hips and knees. The more conducive these factors are to the birthing process, the more likely a vaginal delivery can be performed. If it appears the baby will not be able to be pushed safely through the pelvic area and down the birth canal, a Cesarean section will be recommended. If a C-section is chosen, the urinary tract should be evaluated for re-implantations, diversions, or conduits to make sure they are avoided during the delivery incision. Women with SB have successfully and safely received epidural anesthesia for their delivery. Because the anatomy of the spine is different, the epidural may need to be placed using ultrasound guidance. There are reports of successful epidurals for most myelomeningocele lesion levels, with or without scoliosis. As with all pregnancy issues in Spina Bifida, monitoring the effects of the epidural is trickier than in usual pregnancies. Therefore, it is best to deliver with an obstetrician and hospital experienced in high-risk pregnancies. For women with Spina Bifida who are not yet pregnant, discussing your medical and surgical history with your SB team and high-risk obstetrician before conceiving can maximize the preparation for a healthy delivery.
Q: What are the factors that can increase my chances of having a pregnancy affected by Spina Bifida?
A: Spina Bifida can happen in any pregnancy, and 95% of the occurrences have no family history. The exact cause of Spina Bifida is unknown but likely involves a combination of genetics and environment. Factors that increase risk of a Spina Bifida-affected pregnancy include:
- Previous pregnancy affected by Spina Bifida
- First, second, or third degree relative living with Spina Bifida
- Taking valproic acid or carbamazepine (anti-seizure medications)
- Having diabetes before the beginning of pregnancy (not gestational diabetes)
- Inadequate folic acid intake
- Pre-pregnancy obesity
- Low vitamin B-12 levels in the body
- Having high temperatures early in pregnancy (which may include fever, or exposure to the heat of hot tubs, saunas, and tanning beds)
Q: Am I at greater risk for a heart attack as a wheelchair user who doesn't do regular aerobic activity?
A: There is no information specifically looking at individuals living with Spina Bifida, but our knowledge of the general adult population probably applies. Risk factors for heart attacks include the following:
- Smoking (the most important risk factor)
- High cholesterol
- High blood pressure
- Family history of heart disease and early heart attacks
- Males over 50 years of age and post-menopausal females
Regular physical activity has been shown to protect against coronary heart disease. The National Center on Physical Activity and Disabilities (NCPAD) offers excellent ideas for adaptive exercise and tips for improved cardiovascular health. Also, the Health Guide for Adults Living with Spina Bifida includes a section on physical activity and weight control that is helpful for adults concerned about their general health. This publication is available at SBA’s Marketplace.
Q: Please explain what umbilical cord blood could do for people with Spina Bifida. What hospitals do this?
A: Umbilical cord blood is one type of method for retrieving stem cells. Stem cell transplants are an important part of current and future treatment of some diseases which affect the blood and immune system, such as leukemia and some types of anemia. There is currently no indication of its use in the treatment of Spina Bifida. This is because (currently) stem cells can only be transformed into blood cells, not other tissues. However, the future holds many exciting possibilities that stem cells may be used to treat neurological disorders like Parkinson’s Disease and spinal cord injuries. There is hope for Spina Bifida also as the technology becomes more advanced and widespread. The March of Dimes Web site has a very informative link on the topic of umbilical cord blood and its relevance to stem cell transplants which may be of interest.
Furthermore, the National Marrow Donation Program has provided a list of hospitals that participate in the cord blood banking program.
Q: I read that drinking tea can affect absorption of folic acid in some women. Is this true?
A: Some preliminary research suggests that consumption of some black and green tea inhibits absorption of folic acid and naturally occurring folate.
Q: My sister has a baby with Spina Bifida. Should I increase my folic acid intake from the regular dose of 400 mcg to the higher dose of 4 mg to reduce my risk?
A: Although there is less science behind recommending 4 mg of folic acid for relatives of women who have had a Spina Bifida-affected pregnancy, the risk to women taking this dose is minimal while the potential benefit is considerable. Therefore, six to eight months of high folic acid intake is worth consideration for women in this unique situation. For more information on the role of folic acid in the prevention of Spina Bifida, review SBA’s health information sheet on folic acid.
Q: Can you provide information about the connection between continence and sex?
A: The two are inseparable because the same nerves that control urinary function also control sexual function. Therefore, if one has poor sensation, the other will also. It is very important to have an understanding partner and to communicate clearly about the possibility of urine or stool leakages during sex. Decrease the risk by emptying your bladder and bowels beforehand. This should take care of most of the urine and stool at risk for being accidentally released during sex. In case there is some leakage during sex, have a moist towel nearby to wipe it away. For more information, review SBA’s health information sheets on women’s and men’s health issues.
Q: Can a person with Spina Bifida produce children?
A: YES. Most people with Spina Bifida are capable of producing children. However, there are considerations that should be addressed. In men, one important consideration is erectile dysfunction (ED) due to poor sensation or blood supply in the penis; and the challenge associated with ejaculating sperm effectively to reach the female egg. For more information, review SBA’s health information sheets on women’s and men’s health issues.
Q: Is surgery usually the best treatment for carpal tunnel syndrome (CTS), or should a non-surgical intervention be considered?
A: CTS is a common complication in people who use wheelchairs. There are several possible treatments for CTS, usually starting with non-surgical options like wrist splints and resting, anti-inflammatory medications, and then progressing to surgery if all else fails. CTS will not improve if the repetitive wrist movements do not decrease.
Q: How can I get help for symptomatic SBO when my doctor says that it does not cause pain?
A: SBO is a minor deformity of one or two vertebrae that doesn’t get much attention, yet it can significantly decrease quality of life for some people who suffer from pain or neurological problems associated with it. In such cases, SBO is a more serious problem and requires a thorough neurosurgical assessment of the patient’s symptoms, and an MRI scan. Treatment recommendations can be made after all information is considered.
Q: I was recently diagnosed with SBO during x-rays for an unrelated problem. Should I change my activities in order to protect my spine from now on?
A: If SBO is an incidental finding during a back X-ray, and is not symptomatic, then there is usually no health concern unless it is accompanied by pain or other neurologic symptoms. Approximately 10% or more of the adult population have SBO and never know about it because it does not affect their lives. Such people do not need to reduce normal activities or seek medical care for SBO.
For more information, review SBA’s health information sheet on Spina Bifida Occulta.
Q: My son was born with tethered cord and has not gained 100 % control over his bladder and rectum. I am not sure if it is because of some medical problem, or if he is too lazy to go to the toilet. Kindly advise if we need to go for surgery or what is next for us.
A: You should discuss this with your son’s neurosurgeon who knows the full picture. MRI studies almost always show re-tethering of the spinal cord after primary myelomeningocele repair and/or tethered cord release. The concern for symptomatic re-tethering occurs when there is back or leg pain; new or progressive weakness, tightness (spasticity) or spasms of the legs; or changes in the bowel or bladder function. If these problems are due to symptomatic tethered cord, the urodynamic study usually shows changes in bladder pressure, sphincter pressure, and/or muscle contractions. For more information, review the health information sheet on tethered cord.
Q: It was confirmed by an MRI a couple of months ago that I have another tethered cord. What should I do?
A: If you already had a tethered cord release, it is very common to have MRI evidence of retethering. MRI findings of tethered cord may or may not be associated with tethered cord symptoms such as bowel/bladder problems, pain, or decreased mobility. It is helpful if there are additional findings that indicate the spinal nerves are affected. These objective findings include:
- Change in gait
- Inward turning of the feet
- Tripping or falling
- Change in bladder function compared to previous studies
- Change in findings on manual muscle testing from baseline
From a surgical standpoint, the number of previous tethered cord releases makes a difference on the outcome of each successive surgery. There seems to be diminishing benefits from each subsequent tethered cord release, particularly for adults. Therefore, it is best to discuss what you hope to achieve from the surgery with the neurosurgeon to determine if these goals are likely to be achieved.
Q: Have you come across shoulder or sacral (lower spine) dimples? What do they indicate?
A: The dimples in the shoulder areas are not related to SB. They are innocent and do not indicate any problem. However, a dimple at the base of the spine, also known as a sacral dimple may require further assessment. They are not usually related to Spina Bifida providing ALL of the following are true:
- The dimple or pit is located within the crease between the two buttocks (also called the natal cleft or gluteal cleft).
- The dimple is within 1 inch of the anus and is not bigger than ¼ inch in size.
- The base of the dimple can be seen.
- There is no hair, skin color change, blood vessels (telangiectasias), or blood vessel tumors (hemangiomas) around the spine.
- There is no fatty mass felt under the skin.
- The buttocks crease (gluteal cleft) is straight.
- There are no abnormal neurologic findings on exam (i.e. weak legs, abnormal reflexes)
- If any of the above statements are not true or there are dimples higher up on the back (above the buttocks crease), further testing is advised.
For more information, review SBA’s health information sheet on Spina Bifida Occulta.