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