Moyamoya treatment

From what I understand, there are various treatments for Moyamoya. Let’s start a discussion on personal experiences with your treatment plans.

Hi. I am 38 years old and was recently diagnosed with Moyamoya following a TIA. I was born in S. Korea and adopted as an infant and have no family medical history. I do not have a treatment plan yet but have my initial eval in Jacksonville on 10/04/24. Can you please share your treatment this far and what you experienced with your initial evaluation? Once I know more, I will gladly share my treatment information. Thank you.

Hello. I’m a 66yo Caucasian with no Asian lineage. I was diagnosed late 2022 at Mayo Jax after two TIAs and neuropathy on my left side. My right frontal lobe is severely damaged. Diagnostics have been every six months with bloodwork, cognitive tests and a series of lengthy MRI tests. Although future TIAs or stroke is a very real possibility, I was told the risks outweigh the benefits at this point with surgery. I have to trust my Moya team.

Good morning Bonnie and thank you for your reply and for sharing your information. My name is Andrew. I am very great full to have connected with you. I hope the surgery helps you and can mitigate any additional damage. I searched everywhere in “Connect” and it seems we might be the only two with moyamoya. It shows how rare it really is. I had a TIA and numbing on my right side of my face, my right arm felt “asleep”, and my hands and fingers were very tingly. I’m from Apollo Beach, FL (15 mins south of Tampa) and the neurological team at the hospital called in several others and my angiogram became the “thing to see” by Al the residents and interns. I didn’t like that too much but oh well. I was medically retired from the Navy in 2014 and diagnosed with fibromyalgia with occipital headaches, neuropathy, and other conditions. I had a brain MRI during my medical board and they noted vasculitis. They decided that was the nexus to the headaches and this was it. I have all my medical records and am wondering if it was moyamoya; however, the physicians missed it due to rareness or not knowing what they were seeing. Perhaps it progressed to a point now that caused the TIA. I hope you have a great and safe weekend, thank you again for your message.

I was recently diagnosed with Moya Moya in February of 2024. I’ve been diagnosed with type 1 diabetes for that last 20 years. I am wondering if there is anyone else who is experiencing managing both diseases and if there’s any research that discusses any potential co-morbidity? I also started using an omnipod and managing my diabetes better. I recently suffered another stroke due to Moya Moya and will need to have two brain surgeries so I want to know how my diabetes may impact the recovery process as well.

If anyone has any experience with this or maybe point in a useful direction. Please reply. Thanks.
I'm 45 Male in the USA,Florida, Orlando.

@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?

Hi,
I was diagnosed with primary moyamoya disease in 1998 at age 28, and was getting almost no blood to my brain at that time. I was blessed to find Dr. Michael Scott (who has sadly passed away now) at Children's Hospital in Boston, who used the innovative surgical technique he developed called Pial Synangiosis to improve my blood flow and save my life. It was a miracle, and I lived a symptom free life for many years. Unfortunately, I had an unexpected mild hemorrhagic stroke in 2017, probably due to increased emotional stress related to work. This resulted in disability for me, although I am still able to walk, swim, speak and work extremely part time.

I am writing for two reasons: First, I would love to share more of my story with anyone also struggling with Moyamoya disease to help in any way that I can. I would especially love to connect with anyone who also had Pial Synangiosis surgery for primary moyamoya disease. Second, I am interested to find out if any other moyamoya survivors have had narrowing of their blood vessels to their kidneys and how they found out that they had this narrowing. I am questioning whether this is a possibility for me, and what tests would help me to evaluate this potential risk.
Thank you to Mayo Clinic for this website and thank you for any responses to my email.
Best wishes,
Valerie.

@valeriedawn - welcome to Mayo Clinic Connect. So glad to hear your blood flow was improved and your life saved through your surgery years ago.

I have moved your post here so that you can interact with others who've talked about Moyamoya disease:

- Moyamoya treatment https://connect.mayoclinic.org/discussion/moyamoya-treatment/

Hoping you can interact with some of the others in this discussion such as @aforcucci @tbrooksjerome2 @arianajpalomo and others, and they can let you know if they have had narrowing of their blood vessels to their kidneys and how they found out that they had this narrowing. They can also let you know if they have had had pial synangiosis surgery for primary Moyamoya disease.

Thank you Lisa,
I really appreciate your thoughtful response to my post. I am also very grateful for your help in finding the section about moyamoya, where I can interact with others who are impacted by moyamoya.

Many thanks!

Best wishes,
Valerie.