New paper associating vascular ES with IIH

While the focus of this paper is on the causes of Idiopathic Intracranial Hypertension IIH it identifies causative factors including cerebral vascular obstruction, elongated styloid/C1 impinging the IJV, TOS, HTN…very interesting and relatively new, posted 9/2020

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Thanks JustBreathe, I’ll have a look when I get a minute :grinning:
How are you doing?

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This is sooo interesting. The article stresses that anxiety is a very common experience for people with these issues… Also I noticed the article is by Kjetil Larsen who I believe some of the U.K. members have seen and found to be very helpful!

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The more info the better! Thank you, JustBreathe. I’m Jules’ camp & will read this ASAP.

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Hi Jules, thanks for asking! I am holding my own. Currently I am working on my cervical spine now that it is no longer limited by the styloid attachment to my mandible on both sides, lots of mobility restrictions and weakness. I have dropped into low cranial pressure with the skull base leak. I have an appt this week to make a plan so we will see. Hope you are well :sparkling_heart:

So sorry that you’re still getting the leaks, I hope that you can get some answers- well, preferably solutions! I hope that the mobility & strength will improve round your neck & jaw… :pray: :hugs:

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JustBreathe,

I, too, am very sorry to hear that the CSF leak is still significantly problematic. I hope Dr. Hepworth is able to think “outside the box” to come up with a permanent solution for you. I’m sorry I’ve forgotten, have you been diagnosed w/ EDS or is your instability strictly in your cervical spine? I will be praying your full recovery. :pray: :heart:

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Actually I don’t have any instability but the opposite, rigidity and loss of natural curve in my spine from the lack of motion due to the styloid attachment to the mandible. I do not have EDS, a rarity for sure. But I guess that fits with my rarity of having so many moon size holes in my head :laughing: My neck is already feeling better and I will have repeat xrays to see if what I am doing is actually changing the curves in my spine or not now that I can tolerate the treatment. Order of operation is imperative…first the styloids and vascular compression, then the musculoskeletal and then the leak…seems to me anyways :smirk: I am my own Guinea pig experiment! Cheers :sparkling_heart:

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Hi Blossom, yes we are working with Kjetil Larsen at the moment, would highly recommend him for opinions on scans

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@Peony
I read on his website he is closing his office to enter medical school in 2021, is that correct?

Hi justbreathe, I understood he is stopping his clinic in Norway but still doing on line consultations, best send a message :pray:

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