Smarter Medical Care
Summary: When people are threatened by any serious illness, learning about non-medical issues is an obvious but often neglected need. For example, What can a person do to prepare for a physician visit? At Smarter Medical Care, our mission is to offer practical advice about matters in concise, casual conversations between medical experts during that period of time when people are confronting illness. What are some other “non-medical” issues? How can a person tell their child they are ill? Or minimize mood swings? Or cope with friends who make painful statements? Or manage pain and fatigue? How can recently diagnosed individuals cope with family and friends, or negotiate the medical system, or deal with insurance companies, or manage their time or prepare for tests? These are uncommonly discussed issues that should be addressed. Smarter Medical Care’s podcasts address these issues directly, practically and compassionately.
Women with epilepsy looking to get pregnant can be safely taken through pregnancy with a very high probability of a normal fetus, and no increase in problems to the Mom as well. To increase the chances of a normal baby, it may mean changing medicines to the newer, safer drugs for a period of at least 6 months before trying to get pregnant to make sure the new medicines prevent seizures. Women with epilepsy do have additional problems. Compared to other women, women with epilepsy can have endocrine problems such as higher rates of infertility, irregular cycles and sexual dysfunction. Should these problems exist, there are anti-seizure medicines that can minimize these problems. When choosing to get pregnant, women must also consider the effects of the anti-seizure medicines on babies. Women with epilepsy can expect to have normal babies but there is a slightly higher risk of having certain problems in their baby. Many of these problems in the baby are mild but some can be quite severe. The risk from Mom’s epilepsy to have any of these problems is perhaps twice the non-epileptic pregnant women. The risk to the baby exists because the Mom has epilepsy and may be further increased by certain anti-seizure medicines. For this reason, some medicines –like valproate and barbiturates – are avoided completely. Women can also have a higher risk of migraines, mood problems and depression. There are specialty clinics at hospitals where there are epilepsy specialists as well as groups who care for people with high risk pregnancies. The threat to the baby from Mom having a seizure is higher than the threat of birth defects so that the proper choice of anti-seizure medicines throughout the pregnancy is important. The first line drugs for women thinking of or in fact pregnant are Kepra, Tegretol and Lomictil. Pregnant women with seizures also need counseling about breast feeding. Most of the medicines are put into Mom’s milk if there is breast feeding and the newer ones do not make the baby sleepier. Mom’s may need Vitamin K, especially at the end of the pregnancy while on older anti-seizure medicines. All women need folate in pregnancy. During pregnancy, women will gain weight, retain fluids and have changes in hormones that can change the amount of anti-seizure medicines they need as the pregnancy progresses. Therefore, they need to have blood levels of the anti-seizure medicines during the pregnancy. When delivery is near, the anesthesiologist needs to know about the seizure problem and keep Mom well hydrated. Epilepsy is almost always not inherited. It’s the same risk as the general population though one of the problems of any complicated delivery is seizures.
Women with epilepsy may need to change medicines to stop seizures, to enhance the quality of the life for the woman or to protect the baby of a pregnant woman. There are numerous drugs available at this time, and at least at this time, the dose in any pill in the generic drugs is unacceptably too high. Side effects can occur if the doses vary too much from pill to pill. Dr. King-Stephens discusses these issues in detail, using the example of Kepra. For any individual, we don’t know which medicine is best without trying it. The concern is that these medicines will be needed for long periods of time and we don’t necessarily know the full battery of side effects –especially long-term side effects --- associated with all these medicines. Anti-seizure medicines are affected by other medicines such as anti-depressants. For example, lomictil may need to be increased when birth control pills are added. Changing doses or not needing to change must be evaluated in the context of the whole person – age, sex, other medicines, other illnesses, etc. If there is a seizure, the best care is associated with getting a blood level of the anti-seizure level. Some of the drug interactions may take two to three months to develop before breakthrough occurs and by then, some people forget about the change. Genetic information is also becoming available that may help predict the potential for bad drug side effects, leading to even more personalized care.
When taking Coumadin, management of pain with drugs needs to take into account that many of the medicines to control pain can make your sensitivity to bleed from Coumadin greater. Some pain meds like aspirin, Advil and naprosyn can alter the platelets we rely on to help us stop bleeding. These effects will not be measurable by the INR we use to measure the “Coumadin effect”. An occasional Advil, also called Motrin or ibuprofen, is safe for almost all people. Tylenol is also safe in small doses; higher doses in anyone can cause liver damage and these same doses may affect how you handle Coumadin. Narcotics such as codeine ( which is in Percoset which also has Tylenol) are also OK when on Coumadin. There is no simple answer; talk with your physician. When taking any drugs while on Coumadin, but especially pain meds, always be a good observer of your own response. Easier bruising, gum bleeding or nose bleeds should prompt you to call your physician. As always, on Coumadin, if you suspect your propensity to bleed has increased, get an INR which will rule out some but not all the ways in which Coumadin may interact with other pain meds in you.
Epilepsy is another name for recurrent unprovoked seizures. By unprovoked, neurologists mean there is no identifiable cause of the seizure such as a very low blood sugar, a stroke, meningitis, or alcohol withdrawal. Seizures occur because of the excessive discharge of the neurons in the brain. People then have self-limited abnormalities that can be observed by others such as staring into space or movement disorders. Epilepsy itself is more likely to occur in young children or people over the age of 65 years. Not all epilepsy syndromes are life long, and frequently epilepsy is controllable but not curable with medicines. For the 30% or so of people with epilepsy who do not have good seizure control even with the best available medications, surgery may be beneficial. The goal is control of the seizures with medicines or other techniques that produce minimal or no side effects. When people have recurrent unprovoked seizures, they have epilepsy. It is not a single disease but very different symptoms can occur because of the common pathway of abnormal electrical activity in the brain. Seizures can be partial or they can be global and they can involve motor activity abnormalities such as flailing of arms and legs, or they can involve periods of time where the person with the seizure just appears to have “spaced out”. For the 50 million people worldwide with epilepsy the vast majority are either young children or people over the age of 65 years. Not all epilepsy syndromes are lifelong. Epilepsy is usually controlled but not cured with medication but for the 30% of people with epilepsy who do not respond to seizure control medications, more aggressive treatments such as surgical intervention may be beneficial. This type of evaluation is best performed by neurologist and/or neurosurgeons who concentrate on taking care of people with refractory epilepsy.
If and when you seek out information about your own or others’ illnesses, recognize the information you find will often not be as relevant to the ill person as you first thought. Go to a reliable credible source for information., and preferably, when written material is chosen, have a credible health care professional check it out. Community resource centers often have health care professionals who can help you help yourself. Search engines like Google are a debating society with both proven and unproven information, and much of the information may be written with medical jargon to add to your problems. Friends and the Internet are not a substitute for information from your nurses and physicians. Your friend’s anecdotes may have critical differences from your situation. Proper medical intervention at this time may be a bigger problem if care is delayed when following a pathway incorrectly chosen for your situation.
Smoking harms almost every organ and accounts for nearly 20% of all deaths in the USA. Almost all cancers of the lung and many other cancers are caused by smoking. Heart disease and stroke are increased and death from chronic lung disease—emphysema and bronchitis -- is more than 10 fold higher in smokers. But equally if not more important, smoking is associated with chronic illness before death with severe symptoms that diminish activity. The illnesses and deaths associated with smoking are chronic, not reversible and often not adequately treated by medical care. Stop smoking; even better, don’t start.
When you leave the hospital, you will need instructions to maintain the gains made in the hospital. Despite all the efforts made, misunderstandings can occur about the level of activity involved, foods that are best, wound care, how to take medicines and avoid side effects, and so much more. Ideally, family members should be around in the hospital during care. The investment in time then promotes the best exposure to what should be done at home. Family involvement is so helpful. The challenge these days is to make sure care continues into the home. The transitions probably will require discharge nursing and social services , but also directions about when to call for help, when to see their physician next, and when blood tests may be needed. The expectation of the medical care systems today are that you’re leaving the hospital occurs during a time of transition, and that ongoing care in the house or nursing home will be necessary to promote further healing. One other important item: as you leave, be sure someone is aware you want a copy of the discharge summary. That will give you, in typed form, your medical records, your diagnoses, the medicines they have been given and the tests done.
There is a strong relationship between alcohol and specific cancers such as esophageal cancer and head and neck cancer. At least three quarters of people who have a mouth and throat cancer consume alcohol frequently. People who both drink alcohol and smoke have a much higher risk of developing head and neck cancer than people who use only tobacco alone . Alcohol may be the more important of the two habits that cause head and neck cancers. Half of all those with esophageal cancer consume excessive alcohol. People who drink alcohol frequently are 6 times more likely to develop one of these cancers. Drinking “large” amounts of alcohol (more than one drink a day for women and two drinks a day for men) clearly increases the risk of cancer of the mouth, throat, esophagus, and larynx. “Large” means different things to health care professionals such as doctors and nurses than it does to the average person. Alcohol use is less strongly associated with other cancers but there is little doubt it contributes to the risk to get some other cancers. For example, for breast cancer and for cancers that start in the liver, alcohol is part of the cause of these cancers in some people. For breast cancer which accounts for 38% of all cancers in women, even a small increase in breast cancer associated with alcohol is very important. More than ¼ of a million women were studied by one group and even one drink/day was associated with a 10% increased risk. At 3 drinks per day, the risk appears to be 20% higher than non-drinking women. Researchers reported in April 2011 that as many as 10% of all cancers in the United States are related to drinking this much or more. There is some material that suggests one drink a day may be helpful for your heart and even that it may decrease the risk of being senile. No studies exist to say more alcohol increases these effects and even these effects need more study. Some experts say there is no safe level of alcohol.
Surgery has a definite role in the therapy of some people with epilepsy. Of the three million people with epilepsy, medications are almost always the first line of therapy. One third of those with epilepsy will take medicine but not be controlled. One third of those or about 10% will potentially benefit from surgery. To identify who may benefit, people with epilepsy will need special MRI and other tests. Operations can be done on the very young and even on those more than 70. Each situation needs to be individualized. There are a variety of surgical operations from removal of one small part of brain (the temporal lobe) where the seizure appears to begin to placing different types of devices into or on the surface of the brain in order to find the point where the seizures begin. You need to have the right procedure for the right person. Perhaps unexpectedly, the brain itself does not feel pain; the only parts of the surgery that can potentially cause pain after the surgery are the skin and the outermost very thin covering of the brain – the dura. As a guide, the surgery may take 4-5 hours, pain medicines may be needed for a few days and people are usually home within a few days. Anti-seizure medicines may be continued for up to a year. If we can eliminate the seizures or even markedly reduce them in frequency, we as neurosurgeons and our patients will commonly consider that “a success”.
Before illness strikes, people should know about the medical care systems so they can work within it most effectively. Choose your system of care: ---an HMO system like Kaiser, private practice that can be an HMO, or PPO or a variation of one of these types of insurance, or Medicare or as needed Medicaid. Then, choose and then know your insurance policy. Eventually, when care is needed, people are in one of three groups. One group consist of those getting routine follow up after having had an illness; they have little or no new anxieties (except the night before follow up for a serious illness). A second group are those in whom the doctor or patient have a new and real concern for serious illness. A third group consists of those in the middle of a workup or therapy for a serious illness such as cancer. Your PCP, especially if you have had a long-standing relationship, can help you get the best workup, the proper consultants for you to determine the workup and care, and handle other medical problems and psychosocial issues as they arise. You serve yourself best by understanding what’s going on. But have others help you if possible. For example, have others with you especially for important meetings. If you have cancer, develop relationships with other health care professionals such as the nurses or radiation therapists who are involved should you be getting chemotherapy or radiation. Develop a relationship with the social workers or navigators who should be available through the hospital or the system you’re in. Some individuals are readily available as part of the team that is caring for you. If more help is needed to understand your insurance coverage and your share of cost, ask for that help from the physicians, nurses or personnel at the infusion center. Medical systems offer lots of help from qualified professionals but you will need to ask. You may want another opinion to confirm a diagnosis or suggest other possible therapies. Don’t be afraid to ask for help for fear you’ll offend or in some way push your physicians away. Your PCP or RNs on your team can help get other physicians identified for a second opinion, hear your concerns, be a good listener and offer advice and in other ways help you. You can also ask that your problem be discussed at Tumor Board. Hospitals have periodic meetings among experts in cancer care with different expertise to discuss individual problems. Such discussions can either validate the present course of care being pursued or suggest alternatives or both. These meetings are free to you and can be very helpful.
Melanoma is the most serious form of skin cancer. It begins in the pigmented cells of the skin but, for head and neck melanomas, it can also start in the sinuses in the head or the mouth. It behaves very differently from other cancers of the head and neck. Some of the other cancers of the head and neck begin in the skin, but many begin inside the mouth see such as the tongue, the back of the throat, the tonsils or the larynx. Many are associated with alcohol and smoking whereas melanoma is often associated with sun exposure. The other cancers frequently spread to the neck glands first; melanomas may do that but they also can skip these areas and go elsewhere--- the skin, the liver, the lungs, the bone, the brain or other organs. The surgery needed to produce cure is very different than when a melanoma is in a different location. But some of the information needed to give people the best care are the same for all melanomas: be sure the tumor is melanoma under the microscope and know what type it is, know how deep the tumor is in the skin where the first or primary lesion occurred, know how may cells appear to be dividing and if the body’s immune cells are in the tumor, and and know if the top layer of the primary lesion is not present. This information guides us to know what kind of surgery is best and what our ability to produce a cure is. For melanomas on the skin, repeated exposure to the sun, especially if there are bad sunburns or no sunburn at all, increase your risk of sunburn. Melanomas can occur anywhere on the exposed skin. For these exposed areas, a hat and frequent application of sun screen is helpful to avoid the problem of melanoma later in life. Sometimes, the surgery needed to prevent local recurrence or to produce a cure requires a plastic surgeon to cover areas where the skin needs to be removed. At times, radiation is an important part of the therapy. Prior to this last year (2010), when disease had spread, these physicians had very few tools to help people, but in the last year there have been some very promising drugs now available to give people a better quality of life. Each of the members of a melanoma tumor board can contribute their opinions about what is going on in an individual. There are many doctors in tumor boards and the combined opinions, discussed openly, will create a better opinion for how care is best than the opinions of any single individual physician. The drugs just being made available are more targeted drugs than the previous chemotherapy agents. Some, like ipilumumab, can produce significant problems for the patient but when they work, the responses are well worth it. There are also other new drugs, such as a drug that works against a material, B-raf, that your body is making to drive the cells to grow. The first drug of this type to reach the market is Vemurafenib. It will be some time before we know how to use these drugs properly but the promise is there. Remember though that the best way to prevent melanomas that begin on the skin of the head of the neck is to cover up with clothes, sun screen or both and avoid serious sun burns.
Everything we do in life is either health-supporting or health-negating, down to each of our activities of daily living. How do we create action from this concept? We each have within us a wealth of positive experiences that can be the basis of reaching our goals. There are several “A’s” in these concepts. One is assessment: What am I thinking, what am I doing and is it working? Once the concept of “mindful living” is accepted and some assessment made, actions should emerge from our assessments. We need to do these actions. Health is balance and healing is change to restore balance.. The tasks to do and the decisions for change we make can seem formidable. The decision to change needs you to believe that the decisions should, at the least, pass tests you create to believe they are right, sustainable, kind and intelligent. These principles will help us decide if the changes should be made and should they be made now. Usually health-enhancing behavior is just as easy to do as health-degrading behavior. Talk for a while helps to make a decision, but at some point, we need to take a step. If the action is wrong, it can be reversed. Without action, we may develop anxiety or other health-negating behaviors. The steps should be small enough that you will do them, but not so large as to be paralyzing or in some other way health-negating. For example, we may decide to lose weight. If we are too extreme in setting the goals for these changes, we may not achieve them. If we set the goals at one time, we can change them at any time if re-assessment says that is best. Any steps we take need to be repeated so that the steps become integrated into our behaviors and our lives. That’s how we can eliminate bad habits and foster good ones. Integral to this process is that assessments have to be re-visited. Part of that assessment are observations which are essential after we take some steps. We need to both observe and be prepared to negotiate with ourselves. New plans can always be re-visited to see if they are correct for you. We all can be energized by simply building on the pillars in our life: nutrition, physical exercise, stress management, meditative or contemplative study, and community and relationship. Such self-directed programs go beyond the management of disease. Properly assessed, modified and re-assessed, self-directed core behaviors will help us initiate and maintain change and through those changes—health enhancement. . Making sustainable change will help us make us better in all the areas of the pillars mentioned above. Self-directed change can be very successful in promoting change to change not only to diet, exercise, but also weight, exercise, interactions with others, behavior and many other aspects of our lives. Our well being is life-long learning, and there is a place for guides, mentors and experts. Professional help can give us expert advice, and may require a detour from our maintenance activities to maintain our overall health. Re-assessments can lead us on the course to health enhancement as circumstances change and change again. We all know what we all would like to do to make us better in our own eyes; the next choice we make is the first step to promote the changes we want to achieve.
Everything we do is either health-supporting or health-negating, down to each of our activities of daily living. Once that concept is accepted, each action should be the consequence of “mindful living”. The task can seem formidable, but usually health-enhancing behavior is just as easy to do as health-degrading behavior. We all can be energized by simply building on the pillars in our life: nutrition, physical exercise, stress management, meditative or contemplative study, and community and relationship. Such self-directed programs go beyond the management of disease. The core behaviors we need to do will help us initiate and maintain change and through those changes—health enhancement. Making sustainable change will help us make us better in all the areas of the pillars mentioned above. Self-directed change can be very successful in promoting change to change diet, exercise, weight, behavior and other parts of our lives. Our well being is life-long learning, and there is a place for guides, mentors and experts. We all know what we all would like to do to make us better in our own eyes; the next choice we make is the first step to promote the changes we want to achieve.
Guided imagery is a way to take you to a place where you can understand your feelings and beliefs more completely. The technique can be used to handle many stresses, from day-to-day issues that may send you reeling, all the way to unresolved threats, such as persistent threatening illness. Specifically, many individuals diminish their psychological stresses and physical symptoms as they come to grips with a diagnosis such as cancer. Guided imagery begins by finding time for yourself to focus on breathing in and out, functions that allows your mind to track only your breathing, This simple move allows you to not focus on the stressful events. The next steps are to remember an environment that is completely relaxing and positive. Spend time enjoying that good feeling. Imagery is a natural process available to all that can be done by anyone, but it helps initially to have someone help you until you are comfortable on your own. The goal is to help you develop emotional resiliency and/or less symptoms from an illness like a cancer or its therapies.
Surgery for weight management may be appropriate for those who have tried and not been successful with a prior program. Surgery should not replace the three mainstays of weight management --- behavioral or lifestyle changes, exercise and decreased caloric intake. For now, surgery is not usually considered as “front line’ by most weight management professionals. There are different surgeries that are classified into one of two types: surgeries that decrease the size of the stomach and surgeries that create an inability for the body to absorb calories (but also other potentially essential elements such as vitamins). Surgeries are becoming more common, but long term maintenance of decreased weight still requires behavioral changes in eating as well as exercise. Restrictive procedures to decrease the size of the stomach decreases your desire to eat and your ability to eat; a common surgery is a “sleeve” gastrectomy. There are risks from any of these surgeries including mortality (but that risk is probably less than 0.5% even with the more complicated procedures). Infection and leakage of fluid into the abdomen from within the stomach) are also risks of surgery. The risks go down dramatically among the surgeons who do a lot of these procedures. The least invasive procedures may work for those who are not extremely obese, and depending upon other illnesses, these procedures may be done without a hospital stay. That is a decision between patient and physician. For any of these surgeries, the need to walk before and after surgery is very valuable to help maintain good breathing and prevent clots in the legs. For information about the procedures, a good web site is www.obesityhelp.com. Internet sites can also help with lifestyle change programs; the National Institutes of Health’s web sites are a good place to start.