Fibromuscular dysplasia (FMD): Want to connect

Just found out i have FMD in both carotid arteries with a dissection in my left. Already had brain surgery to remove a huge meningioma and brain surgery to remove a vestibular schwannoma. Am now deaf on the right side. Still have 1 meningioma in my head. Life is not easy. I love being a walking ticking time bomb. Also, I have to wait for 10 months to see a vascular neurologist. I'll probably be dead by then.

My myopic degenerative disease in my left eye, which also had a stroke is gradually getting worse. Now I’m getting injections almost every month. The eye itself got a little bit better where I have some vision, but there’s so much scarring on there. It will never come. Scelaro lenses have helped helped But just a little. No I have degenerative disease in my good eye at 73. I can only hope and pray that I’ll have some vision until the end.

My BA was 4.2mm in 2022. I control my BP with medication, eat low salt diet, elevated the bed to 45 degrees when I sleep and do aquatic exercise to prevent blood upflown into BA. It is working my MRA was done in 7/24 and the results is my BA stable in size and not remarkable.
I hope this information is helpful to you. Good luck.
Tainan

MRA is the test for aneurysm. You seem to have some of symptoms for aneurysm, like headaches and dizziness.
I had those symptoms in 2022 and saw 8 doctors. It was number 8 doctor who is neurologist ordered MRA test to diagnose my aneurysm.
Tainan

I wanted to check in with some of you to see how things are going.

@ellerchim - how are you doing? How are things with your eyesight?

@queenkeb - You'd mentioned having swooshing in your ear and pain in your neck laterally, plus migraines and blurred vision. How are your symptoms?

@caroline58 - how is the vertigo lately?

@hopeful33250 no, I don’t, but when someone writes about a condition/treatment and wants to know more, I look for a relatable. article/link . lol. In the process, Imlearn something too. 😊

Thanks for the link to CC's website, @rashida. It was a great explanation. Do you have FMD?

@stalveymary @gloaming -
https://my.clevelandclinic.org/health/diseases/17001-fibromuscular-dysplasia-fmd

I hope this doesn't sound indifferent or cold, but it's strictly up to you! You have to live under your skin and behind your eyeballs. You are the one who legitimately, and naturally, would want to improve his/her circumstances when at all possible...no? You are the one to assign any weighting to a condition you have, and to its prognosis for future changes to your life.

Me, I want to control what I can, including a doctor's take on me as a person and as a patient. I learn all I can about a new development, wring it dry to the extent my aging brain can do it, and then present in front of an expert...often months later in our vaunted Canadian 'socialized' medical system. They soon learn that I know at least some of what they understand, both about their craft and science, and about me as a person who pays their bills.

If you are worried about this, and who wouldn't be, then do everything in your power to advance your case and to get it resolved to the extent any one expert practitioner can achieve that for you.

I know nothing about FMD, but if it's at all genetic, there's not a lot you can do. If it's reversible, then I would do what it takes. If it's manageable, I would do all that I could stomach doing if only for the most peace of mind available to me.

I had 2 TIA’s and the only thing they could find was I had FMD. Basically told me to not worry. However with 2 mini strokes shouldn’t I take this more seriously