Moyamoya treatment

@tbrooksjerome2

Hi,
I've had a lot of experience with Moyamoya (please read my story for details). The most important point that I learned is that Moyamoya is a progressive disease. There are also different specific time periods that it progresses more in cases in the US and Asian countries--I will try to get the information about it if you are interested. From my memory, age 45 is within the range for it to progress more in the USA.

From my own experience and from interacting with others, I've learned that there are a lot of factors that impact available treatment and it varies extensively depending on where you live in the US or overseas. When you are diagnosed, you will typically be offered different options, and treatment may depend on how much the blood vessels have narrowed for you. I have been told by neurosurgeons that medication can help but it does not solve the underlying problem of how to make sure you get enough blood to your brain and does not help to prevent a bleed or stroke, and surgery is the only way to survive longer with this disease. I have also learned from experience that even after surgery, the blood vessels inside your brain continue to narrow, so having another way to get blood to your brain (from either indirect or direct bypass technique) is essential.

Where I live in Massachusetts, I was lucky at age 28 in 1998 to find Dr. Scott at Children's Hospital in Boston, who did Pial Synangiosis, a form of indirect bypass brain surgery that re-routed healthy blood vessels and placed them on the outside surface of my brain, so they are not subject to the same narrowing as other vessels inside my brain. It worked like a miracle to quickly get enough blood to my brain with no residual symptoms and recovery period of about 6 weeks for me but not everyone is the same. In my case, I was getting almost no blood to my brain and Dr. Scott had a highly trained team and used a technique that he developed and pioneered himself. Unfortunately, he passed away a few years ago.

Currently, Children's Hospital still uses his procedure, but I believe they only see children at this time and, sadly, at age 45 it may not be an option or safe for you. However, other surgical techniques have been developed since that time. At Brigham and Women's Hospital (men are seen there too) in Boston, I am followed by Dr. Rose Du, who is a highly trained and experienced neurosurgeon, who was trained by Dr. Scott to provide surgery for moyamoya disease, and I highly recommend her. Stanford Moyamoya Center has experienced neurosurgeons that use another type of surgery with good success, and I believe that the Mayo clinic is also experienced in doing surgery for Moyamoya. Some places may combine direct and indirect approaches. My advice is to make sure whoever you see has extensive knowledge and experience with Moyamoya disease, as there are also many places that claim to have experience but don't know enough about it.

I hope this is helpful!
Best wishes for your recovery!
Valerie.

Hi Bonnie,
I'm so sorry you have to go through this! I wonder if getting a second opinion might be helpful to you? There's such a wide variety of treatment possibilities and there are some, like the surgery that I had for moyamoya, that can be done even if moyamoya has caused extensive narrowing in your brain. There are two places I would recommend considering if you're interested. One is Dr. Du at Brigham and Women's hospital in Boston MA. The other is Stanford Moyamoya center in California. Dr. Du is the neurosurgeon that follows up with me and is awesome. Insurance should pay for second opinions.
In going through my life with moyamoya since 1998, I have found that the support of friends and family, pets and other patients has been so helpful! If you're still on this website, I'm happy to connect and share more!
Hugs and best wishes,
Valerie.

@aforcucci
Hello Andrew,
I'm curious if you are still on this site? If so, I may be able to offer some ideas to help. I was diagnosed with Primary Moyamoya disease at age 28 in 1998 and had surgery that saved my life. I would be happy to share more to help if you are still on this site.
I wish you the best and hope you find the medical care that you need!
Valerie.

@arianajpalomo

Hi Ariana,
I'm not sure if you are still on this site? I was diagnosed with moyamoya in 1998 and had Pial Synangiosis surgery that really helped! Please see my post for more details.

I do not have diabetes, but I did learn that for some people with Primary moyamoya disease there can also be a narrowing of the blood vessels leading to the kidneys, in addition to the narrowing that occurs in the Carotid artery in the brain. So, I wonder if there is a chance that this is true for you? It might be worth it to bring this up to your doctor. The NIH recommends that everyone with Moyamoya also see a nephrologist to evaluate this further, since there is a higher prevalence of this problem for people with Moyamoya disease.

Best wishes,
Valerie.

@valeriedawn

Good morning and happy Friday! I am still on the site and thank you for contacting me. Back in November of 2024, I had my bypass surgery (Mayo Clinic) on my left side. I had complications (donor arteries clotted, and seizures) during the surgery. The six hour surgery turned into 14 hours. Unfortunately I also had a post surgical infection while in rehab and required infectious disease admittance and treatment with 60 additional ICU days.

Unfortunately, this had me tied up in the hospital and rehab (speech, OT, PT) from November through February 2025. I received my titanium skull flap and had implantation surgery in April of 2026.

I just had my re-evaluation (this month) and angiogram and my right side of my brain is severely affected. I am waiting for my follow up from my neurosurgeon to decided if surgery is needed now, or if we continue our monitoring process.

I would greatly welcome any of your recommendations, ideas, anything that has helped you along the way. Again, I appreciate you making the connection and offering to provide insights.

I hope you have a great and safe remainder of your day and weekend. Thank you!

Very Respectfully,
Andrew Forcucci

Hello again Andrew,
I'm very thankful that you survived this trauma during and after surgery! I'm also glad that you are still on the site and able to respond to my message. I'm so sorry to hear you had that happen after the surgery!

It sounds like the kind of surgery you had is very different from what I had done. Do you know what surgical technique was used on you or what it was called? I haven't heard of "donor vessels" and am not sure what that refers to but maybe that is a new technique that was used?

I had a rare type of surgery called Pial Synangiosis, that is mostly used on children, although I was 28. Healthy blood vessels from somewhere around my eyes were re-routed and placed on the surface of my skull instead of inside my brain, so they wouldn't be subject to the same narrowing from moyamoya disease. Each side of my brain was operated on about 1 month apart and took about 12 hours on each side. I was told that there was bleeding inside my brain during the surgery, but my surgeon and his team were experienced and able to stop the bleeding. I did have 1 small seizure after returning home after the second side was done but Dr. Scott said it was from the change in blood flow and was unlikely to happen again. The seizure medication prescribed at a local hospital had a bad effect on me, and I was able to stop it and never had another seizure since 1998. Other than that, there were no problems after surgery or for the next 19 years, until I had a mild hemorrhagic stroke in 2017, probably caused by stress.

I do not have any medical training and am not a doctor or surgeon, so I'm just sharing what I have learned from doctors and research I have done on my own. However, I really want to help others who are struggling with this scary disease. I have also lived an active and healthy life most of the time, and it was a shock to me when I got diagnosed and when I had the stroke. The stroke in 2017 resulted in disability and was also a shock to Dr. Scott, who followed up on all his patients and always answered my online questions related to the disease. It is also still hard to say exactly what is causing my current symptoms at age 56 that I have but it has made it impossible to work regular hours, and currently I am only able to manage a few hours a week.

There is also still so much not known about Moyamoya disease, which makes it hard to know what is best as far as medical treatment after surgery. I learned from Dr. Scott that some patients he operated on also had narrowing of their blood vessels leading to their kidneys, and I am wondering if this is a possibility for me.

In your case, it sounds like you have a neurosurgeon that is taking care of you. My advice to you is to make sure you have trusting and open communication with those responsible for your care, especially your neurosurgeon. I would have a conversation with your neurosurgeon about whether he or she can work with you to help prevent the bad situation that you had during after the first surgery. Would he or she be willing to consult with other neurosurgeons at Stanford Moyamoya Center or at Brigham and Women's hospital (Dr. Du) in Boston to help improve the next surgery and decrease risk of further problems? Also, when did these other neurosurgeons decide surgery was necessary? I would also recommend looking up Standford, Dr. Du and Children's Hospital in Boston to learn about the surgery they have done there for moyamoya. Stanford treats people with moyamoya from all over the world and has a big research library devoted to moyamoya there, and they have sent me information at my request. Boston Children's Hospital also has a lot of research on moyamoya that you can see online. I think anyone addressing moyamoya disease should be working together to help patients, as there are a lot of different research studies done in this country and around the world, especially in Asian countries where it is more prevalent.

In addition, I have found it extremely important to make sure I've had a lot of support from my husband, family, friends, neighbors and community. For me, learning that I had this rare disease was traumatic and very scary. I needed support for my emotional and spiritual well-being, in addition to my physical well-being. I had to teach my PCP and other doctors about this disease and how it affected me. It was also important for me to do things I enjoy when it was possible. For me, that meant being outdoors, walking, swimming, cross-country skiing, gardening and enjoying nature. It also meant listening to music, reading, baking and watching movies and tv that I enjoyed. Go somewhere that you love, do something that takes your mind off illness, and, if it is helpful to you, have spiritual support. In other words, doing healthy things that help you feel good can also help with the impact of Moyamoya. And be proud that you're already doing something very helpful by reaching out to others who have gone through the same thing!
Sorry if this is too long! I hope it is helpful! Thank you for contacting me. Please keep in touch and let me know how things are going for you, if you would find that helpful.
Best wishes,
Your fellow Moyamoya survivor,
Valerie.