That is so strange & incredibly frustrating for you…I wish I could make some helpful suggestions but I’m UK so don’t know the US system…would it be possible to research any neuro-ophthalmologists in your more local area?
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A friend of mine is an ophthalmologist and would probably be able to recommend one. I know in the past he said I had some pressure on the nerve there and mentioned it as a possibility. I don’t really feel pressure behind my eyes so I’m not sure why Dr. Case is requiring it to take me on as a patient. I can keep trying to contact Dr. Hepworth but you can’t leave messages for his nurse by phone any more so about the only option is messaging through the portal. I believe Dr. H just wanted me to get a venogram to see if there is additional blockage further up in my head. I would think all of my imaging and surgeries would be enough to be seen by a neurologist but I guess not.
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I agree w/ Jules. Your whole “adventure” w/ Dr. H & his staff has been very perplexing. Others have had some trouble w/ their communications, but you take the cake in that arena. I also agree that working w/ medical professionals closer to home may be a better bet.
I do find it curious that Dr. Case wants you to have a lumbar puncture to check for a blockage in your head. Doesn’t make sense to me unless he’s looking for a CSF leak which could be caused by a vascular blockage in your brain. A venogram seems like a much more direct route for discovering a blockage.
All your previous imaging does seem like it would be enough to make you eligible for an appt w/ Dr. Case. Hopefully you’ll get some response from Dr. H’s ofc soon.
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I agree. I’m not sure why the lumbar puncture is necessary. You’d think with my previous imaging along with my continued symptoms post surgery would be enough. When Dr. H referred me I assumed there was some relationship between him and Dr. Case but it doesn’t appear that they are talking and that Dr. Case is willing to see me based on Dr. H’s referral alone.
I heard from Dr. Hepworth’s office twice today. I might just go and buy a lottery ticket 
They said that they probably wouldn’t recommend going through a lumbar puncture when it wouldn’t guarantee that Dr. Case would see me.
They are sending a referral to Dr. Hui in Hawaii and Dr. Fargen in North Carolina. I could be completely off but I seem to remember some mixed reviews on Dr. Fargen(Like I said I might be thinking of another doctor). Obviously Hawaii is a long ways to go and expensive but if that’s my only option I guess we’ll find a way to make it work. Any thoughts on the two?
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These are the top 2 NIR in the country actively working on venous insufficiency. There was a first ever conference this January in Hawaii lead by Dr Hui, Hepworth and Fagen were there as well -Society of Neurointerventional Surgery (SNIS) Cerebral Venous and Cerebrospinal Fluid (CSF) Disorders Committee. Sadly it is this group (about 30 total) who are leading the cause for patients like us. If you can see either of these two that is your best bet in getting an exam and opinion from someone who understands and is interested in helping us.
Great you finally heard back from Hepworth’s office, what a journey for you I’m so sorry!
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We’ve had several members who’ve seen Dr. Fargen & appreciated his knowledge & care. You may be thinking about our one member who offered to be Dr. Fargen’s first patient for a styloidectomy, which didn’t turn out well. He recently had revision surgery done by Dr. Hackman.
I believe Dr. Fargen is an excellent surgeon & REALLY wants to help those w/ ES. I think we need to extend grace to him since the surgery isn’t straight forward, & I expect w/ time, he will become an excellent ES surgeon.
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I totally second what @Isaiah_40_31 just said. I’m reading his book about IIH now and I believe he has the right attitude and skillset, and vast amount of experience in general with IIH management and various other procedures. However, so far he has limited hands-on experience on specifically this sort of procedure (styloidectomy). Saying that, I’m pretty sure that in a few years he will be another big name and sought-after surgeon on this forum.
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It might have been the doctor in NY I was thinking of.
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I was thinking about buying his book.
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I bought a paper one on Amazon, but later found an electronic PDF too (depending on what sort of access to scientific libraries/journals you have, it may come for free).
Also a free article by Fargen et al: https://journals.sagepub.com/doi/full/10.1177/03331024231161323
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Thank you for sharing this link @vdm.
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This may be helpful…
@LivvySheep
@stuuke
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Things have been moving slowly but a little update today. I heard back from Dr Fargen. They’re going to see me in August for testing(angiogram, venogram and lp) but said they can see my jugular is compressed between my carotid artery and my SCM muscle in my neck.
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@stuuke - Good to hear from you! I’d say that’s a very helpful discovery! I wonder if your IJV could be surgically liberated as opposed to stented? I don’t know how that would be done, but it would be worth asking about. Too bad your jugular was compressed in 2 places, but at least your styloidectomy conquered one area of compression. I hope Dr. Fargen is able to help you FINALLY make all your suffering history!
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I kind of wonder if the muscle dystonia is a symptom or the cause of my issues. I’ve definitely felt that the uncontrollable muscle tightness in my neck was a big part of my issues. I wish I could find out what is triggering my scm.
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Has anyone said anything about your C-1 vertebra being out of alignment w/ the rest of your spine? We’ve recently had several members whose C-1 vertebras have been tilted or one side is rotated forward putting pressure on muscles/other soft tissues & causing problems. Some have seen Atlas-Orthogonal chiropractors who have helped get C-1 back into the position it should be in. If you have any CT images that show your C-1 from behind, you could make a self-assessment.
Another possibility is accessory nerve irritation though that usually causes neck/shoulder pain. In the absence of pain, it’s likely not the nerve.
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Shame that it’s a long wait for you, I hope Dr Fargen can give you some answers!
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Great to hear things are moving forward and there is some light on your situation! Thank you for the update, thinking of you!
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Do we have anyone here that has done the Friday/Monday exams with Dr. Fargen? I’m just kind of wondering about the logistics of it. Where people stay, do I need someone with me, can I drive, etc…
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