Moyamoya Treatment

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.

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?