hey gang! I had my first brain MRI and I wanted to know if anyone had a finding of "Prominent dilated perivascular spaces in the bilateral inferior basal ganglia."? My IIH is related to jugular stenosis/Eagle Syndrome so I am thinking my high pressure and this new finding is causing my IIH, but I wanted to see if there were others like me with the same finding!
I don’t recall anyone on our forum having that specific diagnosis (I did do a search & only your post came up). Have you seen a doctor to find out what all that means & if it’s significant? It does seem it could be related to IH, either as a contributor or as a symptom of it, but I truly have no idea.
I looked up perivascular spaces, & they’re spaces around blood vessels in the inferior basal ganglia which are deep inside your brain.
So my neurologist is the one who ordered the brain MRI, but I don’t trust her because she has been very dismissive of my diagnosis since it occurs via jugular stenosis/eagle and not traditional (outdated) IIH. She even commented that my brain MRI looked “normal” and “reassuring”. I did try asking her what this meant but got no response so far, but I am hoping that I will get something before thanksgiving.
I plan on bringing this to Dr. Fargen, Dr. Hepworth and Dr. Costantino to see if they have any ideas. But from what I did try to research on my own, the inferior basal ganglia possibly controls metabolic waste management + how CSF circulates through the spinal cord.
I found this paper which sort of reflects what I am talking about, but I’m not sure what any of this means honestly. I definitely don’t have Parkinson’s or anything neurodegenerative, but I think based on what I could see, it could definitely be jugular stenosis related: https://j-stroke.org/upload/pdf/jos-2022-01004.pdf
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Based on the information in the research article (I didn’t read the whole thing), it does sound like it’s worth following up on to make sure it’s not just an incidental finding. Do you have appointments set up with Drs. Fargen, Hepworth & Costantino? If so I hope at least one of those appointments is coming up soon!
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Yep! I have appointments with Hepworth and Costantino. They are just far out since Costantino is out right now and Hepworth is impossible to get in with. Fargen I’ll have to see if he’s willing to take a look. My guess is, this is going to be a weird rare variant that no one understands and I am going to have a lot of dismissiveness, but I am hoping that at least with these three, that won’t be the case.l ^^;
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Yes!!!
I think I may have an answer for you!!
I have consulted with Dr. Costantino and am having surgery with Dr. Hepworth in February. My brain MRI showed “enlarged perivascular space in the medial right basal ganglia.” My take on this? Its from the very large collateral veins that have formed and based on my appointment from Hep, my right collateral vein has such a huge constriction at base of skull obstructing flow capacity and is compressed at C1. He said it is quite significant. I will know more after my venogram. The pain in that area is quite intense. My right jugular vein has more blood flow going through it as the left is swollen and quite small. Guarantee, you have something similar.
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Thank you for your response Brandy! This makes so much sense and I am glad you are confirming my suspicions. I am glad both Hepworth and Costantino are aware of what this is and how they may address it. Mine is bilateral so I think unfortunately I will need a bilateral approach, but I was already prepared for this since Fargen felt that was the approach that was going to have to be taken. My pain has always been on both sides so it makes sense for me that both sides are affected. I hope you are able to get relief from yours soon. I am so glad you have a surgery booked with Hepworth. What made you choose him over Costantino? Just out of curiosity.
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I also wanted to mention that I do not have high inter cranial pressure (or so the neuro opthamologist says) but Hep informed me that I have more blood that is flowing through my right internal jugular vein than my left. My left side is small and swollen. All of this could be contributing to the dilated perivascular space in the basal ganglia. He also diagnosed me with confluence o sinuses and congestion on my cerebellum/nervous system creating imperfect blood flow. We are thinking of stenting after surgery of left transverse sinus. Nothing will be determined until after surgery. I have a bunch of other crap going on but thats for another post…lol…
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I would love to hear about all of this and your thoughts on Costantino vs Hepworth! If you wouldn’t mind DMing me that would really help. I don’t have follow ups with either one until December (Dr. C) and January (Dr. H) and you are already being so helpful!
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Will do!!!
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