@tbrooksjerome2 - I moved your post here so others who've talked about Moyamoya could see your inquiry about Iloprost.

For those unfamilar with Iloprost, here is some information on this medication:

- Iloprost https://www.mayoclinic.org/drugs-supplements/iloprost-inhalation-route/description/drg-20064280

tbrooksjerome2 - have you decided whether to take this medication or something else your doctor suggested? If so, how's it going?

@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.