Hope everyone is doing well! I wanted to reach out as I just had my six month follow-up from the Seal-it embolization procedure. I am now seeing Genetics & Vascular Medicine to see what is causing the weakness in my arteries/vessels. Overall my follow-up was good - the Seal-It device is still there and looking like it should be! I was happy about that. I do have a small 1.5x1.5 anterior choroidal artery unruptured aneurysm, a dissection in my right V3 vertebral artery, and now possible stenosis in my bilateral distal transverse dural venous sinuses. A mouthful I know. I’m 37 years old, never smoked, and no history of high blood pressure.
As far as the seal-it procedure and recovery - I am happy overall and would feel comfortable going that route again, if needed.
I was curious if anyone else who has been diagnosed with aneurysm has also been diagnosed with Fibromuscular Dysplasia and how they may be maintaining that?
Thanks for the update on the Seal-it Tara. It always helps when we can read about something new. Sorry to read about your FMD, unsure how it’s managed. It always interests me when we get a diagnosis that they don’t know the cause but have learned how to help us manage it. I hope a member can help you out. I did find this which you’re probably already aware FMDSA and I think this is based in Ohio, unsure about that as well https://www.uhhospitals.org/health-information/classes-and-events/106964.
I was diagnosed with FMD in June of 2022, I was having a cerebral angiogram preparing for a crainiotomy. During which I got a carotid artery disecction. This led to the finding of 2 more aneurysms and stenosis/ beading. fibromuscular dysplasia.
Tbh, i spiraled. I consulted Dr Google too much. My dr said no lifting, no doing much of anything. I had no idea what FMD was. I was so scared to do anything. That summer was a nightmare. Finally, the disecction healed and I proceeded with a crainiotomy for 2 of the aneurysms. During which I lost most of my vision. So, yeah, that sucks. But, ive found FMDSA.org and did educational research. Joined reputable support groups.
Im now 60, I live part time with each of my daughters and my son is close by. You have limitations to follow, like watch out for your neck don’t overextend. No roller coasters, keep your blood pressure down and others depending on the individual.
Good thing is. You can have a normal healthy long life.
You’ve got this!! If a blind old lady can do it, you can!
Thank you for replying! It’s good to know and hear other individuals that have FMD and their story. It is kind of scary and trying not to read too much until I’m officially diagnosed. But I would like to know what to expect.
It’s great to hear that your Seal-It follow-up went well and the device is doing its job. Taking it one step at a time until you have a definite diagnosis sounds like a smart idea. It seems like hearing other people’s experiences has already helped a bit, and hopefully that continues, whether it’s through this community or the FMDSA support group.
