LIVING WITH MOYAMOYA

For those of us living with moyamoya, our life-altering moment began with a phone call from our doctor. "We have found something on your MRI/MRA. We believe you have a disease called moyamoya."

 

​If you have found your way to this site, you or a loved one have lived that moment. You are looking for information, support, help and hope. You have come to the right place.

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A moyamoya diagnosis is life-changing. It does not have to be life-ending.

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​When you are first diagnosed, it can feel overwhelming. You are plunged headfirst into medical testing, prodding, poking and doctor's visits. You are looking for cures, treatments and answers from your doctors. You may be one of only a handful of patients your medical team has encountered with moyamoya or even the first. Life can feel out of control. You are living in response mode.

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Let us arm you with the strategies, information, resources and support you need to manage your moyamoya and live your best life despite your diagnosis. 

 

​Coping Strategies for Living with Moyamoya

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Get smart. Moyamoya is rare and unfortunately not well-known across the medical community. It is going to be important for you to learn everything you can about your condition, so you will be better equipped to make decisions about your care. Start early by seeking out centers that specialize in the treatment of moyamoya for your initial surgical decisions. Because of the rarity of this disease, this may involve travel during the early stages of your treatment but engaging with experts from the beginning will help you build the reliable knowledge base you are going to need to navigate medical decisions when experts are not available.​

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Build a team. Moyamoya is for life. Neurosurgeons are going to be the specialists who have the largest body of knowledge about your disease, but neurosurgeons operate; they aren’t intended to provide day-to-day disease management. Surgical interventions reduce your risk for stroke and, in many cases, reduce neurological symptoms associated with reduced blood flow to the brain; however, most patients do experience some degree of ongoing symptoms that require continued disease management. Establish a local team of doctors and other medical professionals (internal medicine, neurology and others appropriate for your other medical history). 

 

Coordinate your care. In an ideal world, your team will talk to each other. In the real world, this doesn't always happen as easily as you would want or expect.

1. Choose a trusted primary care physician (preferably an internal medicine doctor) to help with referrals, coordination, and to manage your overall care.

2. Register with each of your doctors to gain access to their online record portals, so you can easily share records across your team of doctors.

3. Request two CDs (one to keep, one to share) of any imaging at the time of appointment.

4. Keep a current list on your phone or in a notebook detailing your medications.

5. Keep a symptom log - include dates, times, durations/how long they last, and the severity (There are a lot of great phone apps that can simplify this for you.)

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Manage your medications. The good news is that for many moyamoya patients, medication therapy is limited to a single aspirin a day. Other patients require more aggressive medical management therapies including anticoagulants, blood pressure medications, anti-convulsant medicine, migraine preventatives and pain relief medications. Remembering to take one medication a day can be challenging; remembering to take multiple medications a day is daunting.

1. Use pillboxes and alarms to help ensure you don’t miss necessary doses.

2. Before adding any new medication (over-the-counter or prescribed), consult with your moyamoya specialist and pharmacist. Medications with any potential to thicken the blood or cause changes in your blood pressure need to be carefully vetted by your specialist.  

 

​Live your healthiest life. Any chronic illness is going to benefit from lifestyle changes (quitting cigarettes, eating healthier, exercising, etc.). Moyamoya is no different, but making healthy shifts when you are navigating headaches and neuro-fatigue, while also stressed by a life-challenging diagnosis, can feel impossible. Talk to your doctor to determine what lifestyle changes you should consider. Ask them for referrals to resources to accomplish your goals. Most hospitals offer smoking cessation courses. Physical Therapy can be a safe and effective way to move back into an exercise routine. A nutritionist can design a plan that is individualized to your unique health challenges. Invite a friend to change with you. Give yourself grace, reminding yourself that successfully navigating lifestyle changes is going to be more challenging during your storm. Don’t place the expectation on yourself of changing everything overnight.

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​Invest in your emotional health. Emotional health is central to overall health. You have just experienced a life-altering event; you are dealing with a disease that impacts how your brain works; you may be taking medications that interfere with your emotions and you may be dealing with the grief of losing the life you knew before you heard the word moyamoya.  Consider wrapping a psychiatrist and/or counselor into your care team. 

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​It takes a village. Doctors, nurses and other health care professionals aren’t always the best resource for information about what it’s like to recover from brain surgery or how to live day-to-day with moyamoya. To get the real scoop, look for a support group and talk with people who have been through what you are facing. There are multiple online moyamoya support groups you can access through Facebook, including our own World Moyamoya Alliance public page, and the World Moyamoya Day – May 6 group, which is a confidential group (with heightened privacy settings). On both pages, you can ask questions, share information, meet other moyamoya warriors, and receive support. 

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