since december 2024 they incidentally found a 5.8 brain aneurysm. then found i have fibro muscular dysplasia in my carotoids. Since I had a choice I opted to wait and in 2 days will have another mra a year later to compare.
my 2nd opinion dr wanted to do a cerebral angiogram, but I wasn’t sure if that enters my carotoids so I opted to wait on that also.
I have so many questions not quite answered. and besides my severe headaches which they think are not related, I am fine.
Does anyone know about the cerebral angiogram ? Also if they put any catheter in I’m afraid to put it through my carotoids.
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Hi there! So, I had a 4mm anterior communicating artery unruptured aneurysm - they didn’t think it would cause me severe headaches even headaches; however, since having the seal-it web device - I have not had anymore headaches for about a year now.
I actually go for my cerebral follow up angiogram in a few weeks. They ended up going through my groin. I guess they said I don’t have a great vascular system. I would assume it does go through the carotid just because they found a small dissection in mine during the procedure.
I am curious, how did they find out you have FMD in your carotid? Was there certain testing?
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The ct angiogram showed fmd in my carotoids
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Hi @sunnyg1590 -
So glad to hear from you!
I had an aneurysm on my left PICA, so admittedly it is a rare spot for an aneurysm. That being said, I have had several angiograms as part of my journey so I am happy to help answer whatever questions you might have had.
If you haven’t had one/seen already, the Cleveland Clinic has a page on Cerebral Angiograms that talks about the procedure generally. My guess (from a non-medical, patient perspective) is that your doctors would want to see your aneurysm, hence the idea of doing the angiogram. I imagine it depends on where your aneurysm is located as to how they would get there. (E.g., the Stroke Foundation in Australia has a nice (simple) image of the arteries.
Please let us know what we can do to support you!!
Fin Whale Fan 
Ive had mri, mra, ct angiogram after they 1st found it last year. Now tomorrow is an mra followup 1 year later.
Im afraid of the cerebral angiogram since they found my carotoids have rare fibro muscular dysplasia.
I found this that explains it really well https://youtu.be/JJyf2lvB-Ps?si=NJBlb9tBJWoRyU_T when the surgeon is using the femoral artery. It’s very similar to the radial artery as the catheter will be taken to external carotid and then to the internal carotid. My arteries are all tortuous (squiggly) and I’ve not had any major problems with the catheter getting into my brain and back out. I did have a pretty decent sized hematoma due to the Resident not putting enough pressure on the plug resulting in my surgeon doing a handstand on it. That’s a slight exaggeration but I don’t know what else to call it when someone pushes hard enough they’re on their tiptoes.
Does that mean you have fmd in carotoids too? Well now my insurance messed up my scheduled mra for tomorrow and my neurosurgeon dont taj
Ke my insurance so im beside myself
Sorry, I really don’t know anything about FMD so I found this https://www.hopkinsmedicine.org/health/conditions-and-diseases/fibromuscular-dysplasia-fmd and the DSA stands for Digital Subtraction Angiography. We just call it a diagnostic angiogram or angiogram. This article does give the common areas, renal, carotid and vertebral arteries for it. But apparently they can still do the angiogram so that’s good news.
Insurance and doctors can be frustrating and if a surgeon doesn’t accept your insurance, very expensive. Does your insurance company have a list of neurosurgeons that do take your insurance? If you have a medical school with a neurosurgeon school around you that may be your best bet. We travel an hour or so to see mine at AHWFBH in Winston Salem.
Of course I had to look the schools up, seems like you’ve got 3 UF Med School Residency » Lillian S. Wells Department of Neurosurgery at the University of Florida » College of Medicine » University of Florida, Mayo in Jacksonville Curriculum - Neurologic Surgery Residency (Florida) - Mayo Clinic College of Medicine & Science and UMH Find a Doctor | University of Miami Health System
Hang in there, remember to do some deep breathing. Please keep in touch, remember we are here for you!
My neurosurgeon did take my ins 2025 but my ins changed this year and he dontnow
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Ask him if they’re still trying to work it out with your insurance company. I went to my PCP once and they hadn’t come to an agreement yet, she said not to worry about it, they’d work it out. A month later they did, seems it was around this time of year. It’s nerve wracking. Both sides want to make more money and we get caught in the middle. At least that’s what I told the guy who I called with my insurance company who also told me not to worry
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Thank you so much fir the info. Why would I go to a residency school? Isn’t it better to have a well experienced dr?
There are very experienced surgeons at a teaching hospital, the surgeons teach the Residents. Mine had three Residents that came by doing rounds with some others but she’s always done my procedures. Teaching hospitals usually get more patients which means more practice. My local hospital couldn’t do my repair when I ruptured so they flew me to Winston Salem.
Hi Sunny! While I cannot speak to the fibro muscular dysplasia situation, I just had a cerebral angiogram (digital subtraction angiography) at UCLA Health last Thursday under moderate sedation. The anticipation is much worse than the actual experience. My doctors prescribed Versed and Fentanyl so while I was awake and cognizant about what was happening, I didn’t care much. You do not feel the catheter moving through your arteries - it’s very soft and pliable. When they add the contrast dye, you feel a warming sensation which is a little odd, but it doesn’t hurt. My arm was a little sore towards the end of it. The whole procedure took maybe 45 minutes. I got a migraine shortly after but it passed quicky and was back to normal the next day.
It’s generally considered a very safe procedure with minimal risks, those being a small chance of artery injury and displacing plaque built up in your vessels which could cause a small stroke. Of 4000 angiograms my doctor has performed, only 4 patients experienced mild stroke-like symptoms afterwards. If your provider thinks you’re a candidate, he’s likely already weighed the risk of fibro muscular dysplasia, but it couldn’t hurt to bring your concerns up again directly.
I hope this is helpful. Happy to answer any other questions.
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