Frequently Asked Questions
Frequently asked questions and answers for moyamoya patients and families treated at Stanford Hospital and Clinics:
- Is moyamoya curable?
Moyamoya is a progressive disease that does not improve without treatment. While moyamoya itself is not curable, surgery to provide alternative blood flow to the brain prevents the symptoms related to moyamoya and can provide an excellent long term outcome with significant stroke risk reduction.
- Is moyamoya disease genetic?
Moyamoya disease runs in families in approximately 8-10% of the time in Dr. Steinberg's series. Although there is no direct genetic link identified, we recommend that if more than one family member has moyamoya, others be tested for the disease, especially if there are symptoms. Screening tests for family members might include an MRI/MRA head scan.
- What are the most common symptoms when patients are diagnosed with moyamoya?
Patients most commonly present with strokes, mini-strokes (TIA's) and/or headaches. Stroke symptoms can include numbness or weakness in the extremities, visual changes and/or difficulty speaking or understanding words.
- What is neuropsychological assessment and why do it?
Neuropsychological assessment is an evaluation of your cognitive abilities or thinking skills. Examples of such abilities are memory, planning/organizing, and language. Cognition may be changed by moyamoya disease. The assessment helps the team know if any of these abilities have been affected. It also provides documentation or a baseline of cognitive abilities before surgery. This can be compared to the results of a second assessment that is performed after surgery.
- Does having surgery hurt?
There is some incisional scalp pain and tenderness for about a week after surgery. In addition, some patients have headaches. Medication is provided to minimize the discomfort.
- Are there medications I will have to take after surgery?
Patients are advised to stay on lifelong aspirin after bypass surgery for moyamoya. This is used to help keep optimal blood flow through the bypass. Patients who have side effects from the aspirin such as excessive bruising/bleeding or stomach upset should contact Dr. Steinberg's office. Other possible medications will be reviewed with patients on an individual basis during hospitalization or at each clinic visit.
- How many days will I be in the hospital after surgery?
Most patients are in the hospital for 4 days after each bypass surgery. The first night is in the ICU and the 2nd-4th nights are usually on the neurosurgery ward. However, each patient recovers at a different rate and may have different hospitalization needs.
- What activities am I limited to after surgery?
We want you to be up and around starting the second day after surgery. Activity will be limited to walking, with distance and time increasing gradually over a month. After one month, most pre-operative activities can be resumed. Specific activity restrictions will be reviewed during your postoperative clinic visit.
- I keep hearing that it's important to stay hydrated. Why is this, and what kinds of liquids should I be drinking?
Hydration is important to help keep your blood volume up and therefore keep adequate flow through the bypass grafts. IV hydration is maintained while you are in the hospital. After discharge, patients are advised to drink about 2 liters of fluids each day.
- How long after surgery do I have to wait before I can wash my hair?
The scalp can be wet if the incision is covered with waterproof tape starting a few days after surgery. Hair can be washed without covering the incision starting one week after surgery.
- How long will the sutures/staples are kept in my incision?
Most adult patients have incisions closed with staples. It takes at least 7 full days for the incision to heal enough for staples to be removed. The incisions of pediatric patients are often closed with dissolvable suture material, which dissolves over a period of a couple of weeks.
- Can I dye/color my hair or use any hair products in my hair?
Patients should wait until the incision is well healed before coloring or using processing agents on their hair. This generally takes at least 4 weeks, and sometimes a few weeks longer.
- Will symptoms go away after surgery?
It is not uncommon for patients to have persistent symptoms for several weeks after surgery. It's very unusual for patients to have a stroke after surgery. We advise patients that most new post op symptoms will likely gradually improve after surgery, but to keep a log/diary of them and communicate them to our team. Deficits from previous strokes are unlikely to improve with surgery.
- I have headaches. Will these go away?
Headaches may or may not be related to moyamoya. Therefore, it's difficult to say if they will be improved with surgery. They may temporarily be worsened after surgery.
- How long will I be off of work?
This can vary from patient to patient, but we recommend that most patients plan to take off approximately 4 6 weeks for surgical recovery.
- How long does it take for my strength and energy to come back after surgery?
This is also variable from patient to patient. Most patients experience a gradual recovery over the course of a several weeks. It's not unusual for patients to feel pretty good shortly after surgery, and then to over-exert themselves. This sometimes results in a feeling of low energy. Be patient with yourself and give your body adequate time to recover!
- Can I drink caffeinated beverages?
Avoiding excessive caffeinated drinks is important, as they will make you urinate a lot and actually lose fluids. However, this does not mean caffeine is prohibited. It's just recommended that it not be used excessively.
- Are there medications I cannot take because I have moyamoya?
We recommend avoiding oral birth control pills or hormone replacement therapy. These medications have a higher risk of causing development of blood clots, which could potentially impair flow through the bypass graft. We recommend discussing alternative methods of birth control with our primary MD or gynecologist.
- What are my lifestyle limitations?
There are minimal lifestyle limitations after bypass surgery. Patients should avoid wearing anything tight around the area in front of the ears that might constrict the grafts. There are no other specific limitations, but if you ever have a question, please contact Dr. Steinberg's office.
- Can women get pregnant with moyamoya?
There are no pregnancy restrictions after surgical revascularization to treat moyamoya. Patients are asked to stay on their aspirin, and to have their obstetrician work with our team to ensure open communication is maintained. There are no specific restrictions for labor and delivery. Normal vaginal delivery is fine when considering the history of moyamoya.
- Can moyamoya patients donate blood?
It is recommended that moyamoya patients do not donate blood. Blood donation can deplete the overall blood volume and potentially increase the risk of TIA or stroke.
- When can my child return to school after surgery?
Children generally recover from surgery very quickly. They can return to school as soon as they feel up to it, but usually will stay home for about a week after surgery. Once they return to school, activities such as contact sports and swimming need to be limited until 4 weeks after surgery to allow for the incisions to heal well.
- Can my child play contact sports?
Yes, it's important to allow children to return to as normal a life as possible after brain surgery for moyamoya. We recommend children avoid contact sports for about a month after surgery. After, they can gradually resume whatever sports they were doing before treatment. It's also important to wear protective head gear appropriate for each individual sport. If there is concern about constricting the graft site, contact Dr. Steinberg's office for advice.
- Are bicycle helmets safe to wear when bypass grafts are in place?
Yes! We strongly recommend bicycle helmets be worn at all times when biking, skateboarding or riding a scooter.