FAQs

General

What resources are there for people in the military?

The military has their own insurance system, Tricare, which can be complicated. Julia Aten, who also chairs UBPN's Wings Programs, functions also as our liaison with military families and can assist with many of your questions.

What movements will a person with this injury have difficulty with?

The answer to this question is directly related to the extent of the injury, how many nerves are affected, and to what extent -- a stretch, tear or complete avulsion.

If there is complete recovery, for all intents and purposes there will be no noticeable limitations in the activities of daily living. For those where recovery is incomplete there will be limitations in movement. This kinematic study shows the limitations of certain movements of a small group of OBPI patients versus a "normal" group. Obviously some of these standard limitations have shown to be improved with certain surgical interventions and/or non-invasive intervention such as therapy and splinting. Again it should be noted that these limitations and how they affect the patient are individual, based on both the injury and also the perception of the patient or caretaker. What one person would view as a limitation that should be corrected/treated another may see as no big deal.

What is Early Intervention and what does it cover?

Early intervention is a program that provides services to children from birth to age five. The program is instituted through the Individuals with Disabilities Education Act, Part H for infants and Toddlers and Part B for three to five year olds. Part H is governed by the Department of Public Health, and Part B is through the State Department of Education. Children may be eligible if they are (1) at established risk because they are diagnosed with a condition known to result in a disability or delay (2) at biological risk because of prenatal, perinatal or postnatal histories suggest an increased vulnerability to disability or delay or (3) at environmental risk because the conditions in their surroundings might result in a disability or delay.

Brachial Plexus Palsy would qualify the children under the first eligibility in most cases depending on the severity of the injury, the state that you live in (there may be different criteria to become eligible, such as two areas of need, or two standard deviations from the average etc.), and sadly the experience of the case manager and the tenacity of the caregiver.

The first step is to find if your child is eligible. The Early Intervention program will screen your child using an assessment tool that is age and developmentally appropriate. Assessment instruments include a variety of standardized and criterion references instruments which provide information across the traditional areas of development including cognition, fine and gross motor development, receptive and expressive communication development, social-emotional development and self help. A comprehensive assessment process includes the gathering of information about a wide range of a child's abilities, and parents have the most extensive information in such areas as motivation, interactive abilities, learning style and tolerance for learning. Lastly, if assessment is viewed as an integral part of intervention, then parent participation in assessment introduces the parent as an equal partner in facilitating their child's development.

If your child is found eligible an Individualized Family Service Plan (IFSP) will be developed. The IFSP is required for the provision of early intervention services for eligible infants and toddlers (aged birth to three) and their families and serves as the planning documents, which shape and guide the day to day provision of early childhood intervention services. An Individualized Education plan (IEP) is developed for children 3-5, although with agreement with the school system that administers IEP's, an IFSP can be employed for ages 3-5.

What services may be included in an IFSP? (from 34 Code of Federal Register (CFR) $303.12(d))

  • family training, counseling, and home visits
  • special instruction
  • speech pathology and audiology
  • occupational therapy
  • physical therapy
  • psychological services
  • case management services
  • medical services only for diagnostic or evaluation purposes
  • early intervention, screening, and assessment services
  • health services necessary to enable the infant or toddler to benefit from the other early intervention services
  • social work services
  • vision services
  • assistive technology devices and assistive technology services
  • transportation and related costs that are necessary to enable an infant or toddler and the infant's or toddler's family to receive early intervention services

The field of early childhood intervention must be prepared to use any technology necessary to enhance a child's development. So even if a particular service isn't currently offered by the provider, if it can be shown that it contributes towards the development of the child in a way that other services cannot, then they must consider the service. Aquatic Therapy is one such service that can be fought for. Some of these services may be offered in-house, at the agency or at a hospital/medical facility, however the delivery of services must be tailored to the needs of the child and family-not at the convenience of the EI providers.

What does UBPN do to promote awareness?

Beginning in 1999, UBPN has promoted an Annual Brachial Plexus Awareness Week during the 3rd week in October. That month was chosen as it is National Disability Month. Our goal is to have a national proclamation declaring this week officially in the year 2005 and we are working towards that goal. The Fall issue of Outreach is considered our Awareness issue and we gear our articles toward this broader perspective. Awareness is part of our mission and it infiltrates all that we do.

My doctor says to wait and see what happens. What do I watch for?

Fortunately the wait and see method is successful most of the time with birth palsies. However, too much optimism can lead to too much waiting and delay appropriate care. The timing and degree of muscle recovery in the first 3 to 9 months of life is very predictive of recovery and highlights those infants who may need nerve surgery. If your child has a Horner's syndrome (different size eye pupils, eyelid opening), then the prognosis is poor and you need to see a specialist in the first 3 months of life. Otherwise, you should monitor your child's ability to open his or her fingers, lift his/her arm to the shoulder level, and raise his or her hand to their mouth. Also, be certain to keep the range of motion of all joints full in order to prevent contracture or shoulder dislocation. It is very helpful to work with a therapist with experience with infants with brachial plexus birth palsies. If there is uncertainty, please seek consultation with a specialist in this area.

(UBPN thanks Dr. Peter Waters for contributing this answer)

My child has a brachial plexus injury and is only a few months old. What do I do?

Brachial plexus injuries have a wide spectrum of nerve impairment. Fortunately most begin anti-gravity recovery of shoulder, elbow, wrist and hand function in the first few months of life. If that is the case with your child (he or she can lift their hand towards their mouth in a sitting position; open his or her fingers wide, lift their arm to the shoulder level), then recovery will probably be full. However, if your child has no or minimal signs of recovery in the first three months of life, you should work with your primary care physician to (1) participate in a therapy program to maintain full range of motion of all joints (2) seek consultation regarding indications for nerve surgery.

(UBPN thanks Dr. Peter Waters for contributing this answer)

How often does this happen?

Brachial plexus injuries often occur during the birthing process. Availability of brachial plexus statistics vary widely, but where figures are available the general consensus is that brachial plexus injuries occur in 2-5 out of 1000 births.

How do I apply for SSI?

You can apply for Social Security or SSI benefits at your local Social Security office. You should have your child's SS# and birth certificate available. You will also need to provide records that show your income and assets, as well as those of your child. You may also call this number 1-800-772-1213. You will notice in the list provided by the SSA, that it states "2 limbs amputated", but familes and/or caregivers should not give up if they feel they have a good case. It is also mentioned in this information you may be more successful by having an attorney respresent you. Heed this advice. It is not uncommon to be routinely denied. Please keep this in mind and proceed to the next step. Don't give up.

The following web link may be helpful:
http://www.ssa.gov/pubs/10026.html#applying

How can I subscribe to Outreach?

Outreach is a free subscription. All you need to do is send in your mailing address to outreach@ubpn.org. Outreach is published twice a year.

How can I get reduced or free airfare to travel to surgery?

Julia Aten, who chair's UBPN's Wings Program, can help guide you through this process if you qualify. UBPN does NOT have tickets directly from the airlines. However we can assist you in understanding the process of application with the various airlines who offer tickets to needy families and individuals. If a letter from a non profit organization is required as part of this process, we can also assist with providing that.

How can I get involved?

There are many ways to get involved and help support others. Anyone can participate in the message boards. You can join in or form a local support group. For help in starting or finding a local support group, email Judy Thornberry, who chair's UBPN's Within Reach Program.

If you would like to become involved in UBPN, we have many programs and committees. You can see the programs by going to the Program page on this site and emailing the Program chair that you would like to join the committee. As well, there will be various other opportunities from time to time and we will post on the message boards when we need people to come forward and assist.

How Can I find a support group?

You can find a support group by going to the Support Group Registry on this website. Once at the home page for the Registry, just click on 'List Group Registries' and they will then be arranged geographically.

Does UBPN accept donations?

The United Brachial Plexus Network welcomes donations of any size at any time. Individuals and businesses can direct their contributions to the UBPN general fund, or can choose to fund specific needs from our "Wish List" of particular items and services. UBPN is a registered non-profit 501(c)3 organization and your contribution is tax deductible to the full extent of the law. For more information on how to donate to UBPN, go to our Donations page listed in the menu above.


Legal

How do I find an attorney?

It is easy to find an attorney. The real question should be how do I find a good, qualified attorney that can properly pursue the case. That is more difficult. Your attorney should have experience in birth injury brachial plexus cases. You do not want your lawyer to learn a new area of the law at your expense. Your lawyer should be able to speak to you about the medicine and explain the case to you. If the lawyer cannot speak to you in a way you can understand, how will he or she be able to explain the case to a jury. You should feel comfortable with the lawyer. You will have to work with the lawyer on the case for years possibly. It should be a comfortable fit for you. It should be a positive experience to speak with your lawyer, not a negative one. Your lawyer should always treat you with respect. You are the client, and the lawyer must never forget that. The lawyer works for you and should always remember that. Your lawyer should answer questions you ask. Not every question has an immediate answer, but the lawyer should then tell you why there is not such an answer and tell you when he or she will have more information for you.

As far as locating a lawyer, as you are aware there are lawyers locally and nationally that have experience with brachial plexus cases. Ask your friends for suggestions, contact the local bar associations for names of experienced medical malpractice lawyers. Then call the lawyers and ask about their experience with brachial plexus cases. The internet may be a way to locate names of lawyers, but be careful, be sure to speak with the lawyer and ask about their experience in brachial plexus cases. A lawyer may have experience in medical malpractice cases, but not brachial plexus cases.

(UBPN thanks Ken Levine for contributing this answer.)

Do I have a good malpractice case?

The basic answer is that if a qualifed ob/gyn reviews your medical records and finds that the doctor that delivered your child fell below the standard of care, was negligent, then you do have a good case. Of course as we all know, even good cases, with strong support from medical experts sometimes lose at trial.

The complex answer is that brachial plexus cases come in many different styles. I will try to generally explain:

  1. Pre-natal cases: With women diagnosed with gestational diabetes the physician must be concerned about fetal macrosomia (large baby). It is accepted that babies of gestational diabetic mothers are at greater risk for macrosomia, and in turn shoulder dystocia. When reviewing a case, we look to see if in the pre-natal period were there warning signs that should have alerted the ob/gyn that there was a greater risk of shoulder dystocia. In these cases, our position is that the risks should have been explained to the mother and a cesearian section offered. Other pre-natal risk factors that are important include obesity, prior shoulder dystocia, history of traumatic birth.
  2. Labor cases: In some instances, there is no indication of gestational diabetes, or fetal macrosomia during the pre natal period, yet during the labor process, there are indications of impending shoulder dystocia. For example, labor is usually seperated into three stages. The first stage is early labor, the second stage begins when the mother starts to push and the third stage is at the actual time of delivery. Depending on some other factors such as how many prior deliveries the mother has had, the second stage of labor should last no more than 2 hours. If it is longer, it may be abrupted labor. Slowed labor can be a sign of impending shoulder dystocia, The labor is slowed because the baby is too big to descend properly. The real problems come though with the use of a vacuum or forceps with a baby with slowed labor that has not properly descended. The FDA has reported increased incidence if injury to the baby when a vacuum is used in the face of shoulder dystocia. Although it is a complex medical issue, if the baby has not properly descended, the doctor should not panic. If the baby's fetal heart monitor is fine, the ob/gyn should leave the baby alone. If it descends, that is fine. If not, a cesearian section can be performed. Using a vacuum or forceps to force a baby with shoulder dystocia down is not correct, and can cause serious injury to the baby.
  3. Delivery cases: The third type of case occurs at delivery. In these cases the progress of labor was normal, there is no diagnosis of gestational diabetes and the baby may or may not be macrosomic. In these instances, the shoulder dystocia is first recognized at the time of delivery. Usually when the baby's head shows and then pops back in. This is know as the "turtle sign". At that point the ob/gyn must not panic. If not already done, an episiotomy should be performed, followed by the standard maneuvers to deal with should dystocia-McRoberts manuever, Woods maneuver and suprapubic pressure. If these manueuvers are not done, or if excessive traction is applied to the baby's head during the delivery, it can be the basis of a malpractice case.

 

These are general descriptions. Before any lawyer can advise you about your case the complete medical records must be reviewed, medical research done, and the lawyer should consult with a qualified medical expert.

(UBPN thanks Ken Levine for contributing this answer.)


Medical

What kind of heath care/treatment should I be seeking?

Because this is a complex injury and the extent of injury varies so widely, it is best to seek out the services of someone with experience in treating brachial plexus injuries. UBPN has compiled a Medical Resource Directory which includes most of the specialists worldwide. It is arranged geographically and includes contact information and answers to a questionnaire that we sent to each facility and/or doctor. We are also building a Therapist Resource Directory to assist in finding experienced therapists.

What is Horner's Syndrome?

Horner's Syndrome results from damage to the sympathetic nerve system and involves some or all of the following classic clinical findings: a drooping eyelid (ptosis), smaller pupil (miosis), a sunken eyeball (enophthalmos), and lack of or decreased sweating on the affected side of the face (facial anhidrosis). Abnormal tearing can also result from Horner's. There are no complications nor is there any pain associated with Horner's Syndrome but neither is there a cure. It is important to notify hospital staff before any surgical procedure as they may become alarmed at the lack of dilation of one of the pupils if they do not know the cause.

Should I seek therapy and what is the difference between PT and OT?

Physical therapy and occupational therapy are very important in preventing contractures (muscle tightness) and in maximizing muscle strength and sensation in individuals with brachial plexus injuries. Therapy should be started within the first week after birth and continued typically for years. In general, occupational therapists are trained mostly in arm and hand therapy, while physical therapists deal with the whole body. Often occupational therapists are more familiar with brachial plexus therapy issues. In the pediatric field, it is often difficult to find occupational therapists in many cities and physical therapists are used with great success.


Adult OBPI

What tests should be preformed on the adult OBPI to determine extent of injury?

Some tests that will help uncover the extent of your initial injury are; EMG, MRI of the brachial plexus and cervical spine, nerve conduction studies, and X-rays of shoulder and neck.

OBPI adults should request a full Physical Therapy evaluation on the condition of their spine, arms and legs. The bpi side of the body should be fully evaluated including any gait and balance issues.  If Horner’s Syndrome is part of your injury, you should request that it be noted in all medical records.  Some OBPI adults have experienced breathing difficulties and recurrent battles with bronchitis, pneumonia and asthma.  This could be the result of diaphragm damage due to c4 involvement. While all these tests are not an exact picture of your initial injury (due to natural healing processes) they will document the present extent of your injury.

What problems might I have with the unaffected arm over time?

There are no long term studies explaining the impact on the unaffected arm that we are aware of. The unaffected arm supports the majority of life functions and work. The result of a lifetime of compensation can be overuse and many of the problems connected with repetitive stress syndrome. The extent of the initial injury predicts the amount of overuse. Many adults report arthritis, spinal problems and nerve compression on the unaffected side, therefore, it is best not to push one's endurance to the limit. Overwork or heavy lifting can put a strain on the unaffected arm and may cause damage later on in life.

What does my doctor and the hospital need to know about my bpi prior to a non bpi surgery?

Make sure you talk to the anesthesiologist prior to the surgery and stress that neither arm should be rotated away from the body (the usual position, particularly if it is abdominal surgery is to rotate the arm out about 90 degrees). Some even position it over the head, which is a real "no no" for us. Ask the anesthesiologist to tuck the arm to the side.

Also if there is Horner's Syndrome present, this is also critical, as one pupil will be smaller than the other which could lead them to think that there is something else happening (like brain damage) when it is not. Make sure they look carefully prior to the surgery to determine any differential in pupil size and iris color.

Do not let them take blood pressure or put the IV into the bpi arm under any circumstance. False readings can happen and the arm can be injured further.

Is it important to get copies of medical records?

You should request copies of all test results and films at the time of testing. It is important to keep your own personal file of all medical reports, tests and films. These copies of test results and films will make your visits to other specialists easier and less stressful.  OBPI adults frequently face the lack of medical information on the extent of their initial injury as well as the lack of medical information on the care and treatment they require to function without incurring secondary injuries due to compensation.

There are few long range studies on this injury, therefore many doctors are not aware of the secondary injuries or the toll it takes on your body. This injury impacts your entire body and this impact may have been undocumented and untreated for most of your life. Because of this, all records should be checked for accurate information and kept by you. Should you decide to file for retirement disability (through SSD or your place of employment), these tests will present the necessary documentation and information.

Is arthritis more of a problem for adults with this injury?

Yes, arthritis is associated with overuse of the unaffected shoulder, arm and hand and also with surgeries on the affected shoulder, arm and hand. Many adults have reported good results in pain management for arthritis by using the prescription drugs, Vioxx or Celebrex.


Traumatic Injuries

Why doesn't my arm work?

Your arm is not working because you have some damage to the brachial plexus, the network of nerves that sends signals from the spine to the arm and hand. These signals cause the arm and hand muscles to move. (Brachial means arm, and plexus refers to a network of nerves.)

Why do I feel pain when I have no movement?

Pain sensations normally come from activity generated in terminals of certain sensory nerves. When these are stimulated, they respond by increasing their rate of activity.  The nervous system then interprets this as pain. If an injured area develops ongoing spontaneous activity the patient suffers “neuropathic pain”.   Neuropathic pain results from injury to the nerve and often persists long after healing. It is commonly described as a burning or stabbing pain, sometimes feeling like lightning.

What resources are available to help me return to school?

Many schools offer assistance with the ADA (Americans with Disabilities Act).  You can go to the counseling center at your school or university and get assistance there. They are people that can take notes for you and even write your exams.

What are the diagnostic tools for determining extent of injury?

There are several which look for sensory and motor changes in the affected limb. They include EMG (electromyography), which utilizes a needle electrode inserted into the muscle to measure the ability of the muscle to respond to the electrical impulse, MRI (magnetic resonance imaging) scan and possibly CT Myelogram, where contrast dye is injected into the spine and scanned to see if there is leakage from the spine or other indicators of damage.  Surgical exploration may be scheduled to physically examine the extent of injury.

What are some ways to handle manual tasks?

Many have found that just asking for help is a challenge but in the long run, it makes things easier.  Usually you can be very creative and use your legs for many different things, your thighs can in a sense replace an arm for opening jars, or you can use your knees to hold something down to work on it.  There isn’t anything we can’t do; we just do them a bit differently!

I had the nerve surgery after my accident. How quickly do nerves regenerate?

Nerves grow, or regenerate at a rate of about 1 inch per month.  The nerves need to grow from the point of damage to the finger tips.  Because the nerves grow slowly, this can be a long process.

Do I need my car adapted to drive?

For most of us, driving a manual car is out of question.  Driving an automatic is very possible.  Some people get their cars adapted with knobby balls (suicide knob) for the ease of turning.  Some have chosen a control that works wipers, blinkers, and lights.  Others have chosen not to adapt at all.  It depends on your state’s (country’s) regulations (check on those) and how comfortable you feel driving.


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