What to Ask Your Doctor about Young and Middle-Age Adults with Hydrocephalus

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    Creating and maintaining a good relationship with qualified doctors is one of the most important elements of overall healthcare management. Some people feel nervous when speaking with a doctor, especially a neurosurgeon. It is important, however, to find out about the doctor’s experience and whether there is a good “fit” between the doctor before entrusting him or her with your care.

    It is your role as a patient to become an active member of your Healthcare Team. Being prepared and having questions ready to ask your doctor will help you communicate effectively about your diagnosis, treatment options, and ongoing management of care. The better informed you are, the more equipped you’ll be to manage your condition. Knowing what questions to ask your doctor can help you get the best care.

    It is helpful to bring someone you trust to your doctors’ appointments. It is difficult to manage all the information and emotions you may experience during the appointment. Having a family member or friend accompany you can not only provide comfort and support but also provide an impartial opinion and a second set of ears to review the information with afterward. He or she may also be able to help you by taking notes for later referral and clarification.

    Questions About Your Diagnosis

    • Please explain hydrocephalus to me in simple terms.
    • What type of hydrocephalus do I have?
    • What caused my hydrocephalus?
    • How have you attributed my symptoms to hydrocephalus instead of other cause(s)?
    • Do you think I have had this condition since birth?
    • Can you explain why I have become symptomatic now?
    • Do I need to undergo any additional tests?
    • How many adults with hydrocephalus do you care for each year?
    • What have been the results for these patients? Did they have a similar diagnosis?

    Questions About Treatment

    • What are the treatment options?
    • Which treatment method do you plan to use and why?
    • What are the potential benefits and risks of each treatment option?
    • What makes you believe this type of treatment will be helpful for me?
    • What is the success rate in patients my age?
    • Please describe the different types of shunt systems.
    • If applicable, which shunt system do you plan to use and why?
    • Please describe the different types of valves.
    • If applicable, which type of valve do you plan to use and why?
    • My symptoms are ___________. Is it reasonable to think that they will improve with treatment?
    • If I decide not to undergo treatment, what would be the expected course of my hydrocephalus?

    Questions About Surgery

    • Please explain my surgery to me in simple terms.
    • How many hydrocephalus related surgeries have you performed? How many in the past year?
    • In general, what were the outcomes? What were the common complications, if any?
    • Is there anything I can do to proactively strengthen my body before the surgery?
    • Do you prescribe prophylactic antibiotics?
    • How long will the surgery take?
    • Where and how big will my incision(s) be?
    • Will you shave my head?
    • Will you use sutures or staples to close the wound(s)?
    • How will I feel after the operation?
    • If I have pain, how will it be controlled?
    • How long will I be hospitalized after surgery?
    • Brain surgery is a major procedure with possible serious complications. Is there anything you can tell me that will help allay my fears?

    Questions About Complications

    If the potential complications have not been addressed in the answers above, you may want to ask specifically about them.

    • Please tell me more about the different types of complications.
    • Please tell me more about insidious shunt failure (shunt failure with very subtle symptoms).
    • Please describe the signs and symptoms of a shunt malfunction (shunt failure), infection, and/or ETV closure.
    • If I suspect I am having a complication, what types of testing and evaluation is needed or required?
    • Does infection happen often in your experience?
    • What do you do if there is an infection?
    • How can I recognize the signs of infection?
    • How long do I need to continue to watch out for this after I leave the hospital?
    • Who do I call in case of an emergency? Do I call you when I have a question or if I suspect there is a problem, or do you have a nurse practitioner or clinical nurse specialist?
    • If I have to go to a hospital emergency room, which one should I go to? Is there anything I should take with me – previous scans, etc.?

    Questions About Recovery

    • Who will be involved in my recovery care?
    • Will you prescribe rehabilitation services after surgery to increase my chances of recovery? If so, what kind and how do I get connected to those services?
    • How long is the recovery time – when can I expect to get “back on my feet”?
    • Will there be any restrictions after surgery in terms of activity?
    • When will I be able to return to work?
    • Would you write a letter for my employer explaining my condition and the effect it may have had on my work performance?
    • Do you have any recommendations for what I should tell my coworkers?

    Questions About Ongoing Management

    • Do I need to work with any other specialists (i.e. neurologist, ophthalmologist, etc.)?
    • Who will be in charge of my follow-up care? Will you continue to monitor my condition or will another specialist?
    • Do you recommend a regular interval of follow-up visits, including regularly scheduled scans?
    • How do I obtain access to medical records? Can I get copies or access my electronic file? This can help when you meet a new specialist or if you’d like a second opinion.

    Questions About Social Concerns

    • How will my daily life be affected long term?
    • Will my ability to work, travel, or drive be affected?
    • Will I have any other physical limitations or restrictions? What sports and/or activities can I participate in?
    • Will I experience different symptoms or cognitive problems?
    • Are there any lifestyle changes I should consider?

    General Questions

    • What support resources are available for me and/or my family?
    • Who can I speak with about my financial and/or insurance concerns?
    • Who can help me navigate the medical system?
    •  You are a busy person and I appreciate the time you have taken to answer my questions. After I get home and have time to digest all this information I will probably have more questions. Is there a medically knowledgeable person I could call, like a physician’s assistant (PA) or nurse practitioner (NP), as these questions arise? Or should I contact you directly?

    Questions to Ask Yourself

    Although your specialist has answered all of your questions there still may be some questions you need to ask yourself. For example, should I consider looking for a doctor to provide treatment or offer a second opinion? If the answer is yes, HA has developed an online Physician Directory. Our Physician Directory includes neurosurgeons, neurologists, and neuropsychologists.

    Finally, ask yourself if there is anything more you can do to ensure you continue to live a high quality of life. To learn more about living with hydrocephalus visit, Daily Life.

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