Looks a good article, thanks for posting this! Useful for proving styloid compression of jugular veins can cause IH…I wonder if the doctor Higgins mentioned as an author is the Mr Higgins Mr Axon works with, will do some digging!
Hope your appt is helpful on Thursday!
That is interesting Jules! probably such a small world hey. Yes I have been submerged in Kjetil Larsen’s research, getting used to the ideas so hope can make more sense when we skype, it is amazing what you come across, surely there aren’t more things after this that we don’t know about??
All thanks to Natty posting the link 
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Hi all, thought I would update , but not a complete picture yet … we had a first skype with Kjetil Larsen on thursday, he really knows where to look and checks one place after another very quickly, well, a new idea is on the table - he thinks my daughter is suffering from whip lash, which has damaged the auricular ( there are 2 nerves, he isnt sure which one yet) because of how she describes her pain as ’ sharp, knives’ and where it is ( above her ears), so the whip lash, then he said this is very rare, he thinks she may also have ‘cranioarterial hyperperfusion syndrome secondary to whiplash’, which is causing the pressure problem and pain. We are speaking to him again this week to go through this, so not sure what or where the whip lash is exactly, she has an upright mri on tuesday ( 2 1/2 hours) head, neck, neck in movement, and low back.
Feel very worried it all seems so unknown and complicated at the moment, in that we will need to take Larsen’s ideas to our neurologist, then all considered and who do we go to, so all seems an unknown. But what was truly amazing, Larsen did not doubt the pain she described she was in, which makes it more terrible when we think her pain clinic have been going down a psycologicial route and only offerin g CBT.
Will let you know this week hope that it is clearer, and maybe another week we should hear the results from the MRI.
I would highly recommend him, he really knows his area for sure. Good to get things ruled out for people.
Thank you all, for being there 
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I am glad your Skype session went well and you are putting the puzzle pieces together one by one
Kjetil really does know his stuff,
So he will help you along the way
Fascinating he has picked up on that and the potential hyperperfusion
Did he take a look at your daughters jugulars for compression? I’m sure all was ok in that area otherwise you would of mentioned it
And yes in his articles he is referring to Nick Higgins in Cambridge
HI Natty, it was a difficult consultation, as he is looking and saying things if felt quite shocking, I was holding my breath yet trying to breathe… He started with saying her jugulars looked obstructed - then went on to the nerve problem because of the type of pain, yet he said she is describing pressure aswell, especially can’t lie flat, he said he has never seen this combination, very rare.
We re going to book again this week, he said he wants that nerve block then he will know for sure ( my daughter doesnt want to as has central sensitisation) so will have to see if our neuro can put this together, that is, if he will take the thoughts on.
Did kjetil write a simple letter that you gave to your neurol? or was it the report?
remind me the nick HIggins connection?
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I’m sure it is all so overwhelming. Now matter how old she is, your daughter is your baby that you want to fix
Did he say what the jugulars were obstructed by?
Who is your neuro? If you don’t mind me asking.
I asked him to type out his findings and he emailed them to me. The main points. He typed it up during the session which ran over, so I said I was happy to pay the extra which was £45
Hi Peony,
Did your daughter ever sustain a whiplash injury from a car accident or other activity or is what you’re referring to a whiplash type syndrome where an injury wasn’t sustained but the symptoms mimic those that occur from a whiplash injury?
Hi Isaiah, yes my daughter had a fall some years earlier from a height and knocked her jaw, left her with a pain in her chest on running, where she would have to stop after a few minutes, the dr checked out and said would grow out of it, but never did. Then about 6 -8 weeks before the persisting headache began, she was trialing gymanstic clubs, and had a fall awkward hurt her neck, this got better after a couple of weeks, but think he is infering these as whip lash. It only needs to move awkwardly if somehting is weak, and you can be left with an unresolved pain.
will hope to put it all more together in the next consultation, our neurologist said at the start we could be looking at something presenting atypically, or even never seen before. Hope this is atypical and we can know what we are treating. 
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Thank you for the clarification, Peony. I’m sorry for the injuries she’s sustained & for the symptoms she now suffers. Hopefully you’ve now found the right doctors who will resolve the mystery of what the cause(s) are & can start moving toward treatment & healing for her.
interesting link posted by Kjetil on my headache group - intra cranial pressure and more…https://neurochecklistsupdates.wordpress.com/2017/07/17/what-is-the-most-sensitive-mri-sign-of-iih/?fbclid=IwAR0cMEdTTCY0qhsG9zuWuQ2HZLgArL
Hi all,
had the second consult with kjetil Larsen this morning, he is suggesting quite a lot more investigations, and ultimately is heading to ‘‘craniovascular hyperperfusion phenomenon (TOS CVH) secondary to thoracic outlet syndrome due to whiplash’’
I guess it is similar to Eagles, and Nutcracker but of the clavicle…so compression but in a different place, trouble is is not very well known and alot of debate around it, so he said could be difficult getting what is needed.
We ll talk it all through with our neurologist once he has seen the upright mri report.
So we have more ideas, but need to do more investigations to be sure, what a long road, but know you have all been there 
OMG peony! It sure sounds like you got a good doc who will get to the bottom of this! this is so good to hear. I am sooooooo… wishing for a positive outcome and some relief for your daughter. I cant wait to hear the updates and progress.
Interesting. I am going to have to look up that term so I have a better understanding of it and read the link info. I do know some about thoracic outlet syndrome and did have surgery on one side in the early 2000’s. I had scar tissue that was compressing the nerves. That surgery was minor in the big scheme of things and I did get relief from it. I had a pretty good whiplash accident in my late teens and I had never given it any thought until you brought it up. I have wondered still how the whiplash dates back to causation of ES. You are on the road and I see a light at the end of the tunnel for you and your daughter.
thanks so much for your kind wishes Snapple 
That is so interesting that you had surgury, are you in the England or America?
when you had that surgury, what did they say had caused it at the time? think I did read some injury can cause the calcification of ES? and I guess whip lash might just move the angle of the styloid even if they are not long, and cause compression?
Will keep posted once we know any more 
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Hi Peony,
I, too, am so glad to hear what you’ve learned from Dr. Larsen. I haven’t read the article yet but will get to it. It’s almost miraculous to find a doctor who is versed in obscure syndromes & health challenges. I’m hoping the pieces of your daughter’s symptoms will start falling into place so treatment can soon begin along with recovery or at least stabilization.
As far as your comment about ES possibly being caused by injury…YES to that. It’s one of the suspected culprits. Whiplash & head injuryies (I had both in my teens & early 20s) put a lot of stress into the soft structures in the neck. As our bodies work to repair, they often lay down scar tissue or extra calcium to provide additional support to an area that has been injured. Unfortunately, that extra support often doesn’t fit well into the space where it forms so it causes other problems rather than doing what the body intends. It’s sort of a vicious circle.
Other possible causes of ES are heredity (we’ve seen it in multiple family members of several of our forum members), hormonal imbalance, & neck/throat surgeries such as tonsilectomies where scar tissue is laid down & can put pressure on the styloids causing them to “bulk up”.
I’ll be praying for you & your daughter as you continue down the road of discovery. I so hope she (& you) can regain normalcy in her life soon.
Hi peony just wanted to say Thoracic outlet syndrome is one of the diagnoses that has been floated for me along with eagle syndrome… I tried a neck brace when my doctor suspected TOS (basically theorizing my neck muscles were compressing the vein somewhere.) BUT it did not help at all and seemed to make my symptoms worse. There are surgeries that can help with TOS, my understanding is they can clip the muscle involved to release it… and also injections but since the neck brace experiment failed, my doctor was not convinced that was the cause and last I saw him he was back on the eagle syndrome path. I’m so glad you’ve found a doctor who has some ideas on what is going on. Hang in there!!
hi Blossom, thanks very much for posting… are you in England? We have been given some recomendations for TOC in England including a physiotherapist , and just joined the TOC group yesterday! there was a link to a really lovely clear dr about TOC :https://www.youtube.com/watch?v=LG03vMNX0NA&feature=youtu.be&fbclid=IwAR1FVAjQtuHvSLciU5vvsQS_xXM1as3AJ7Nvz-8oL7DiooZPSYuPix9tOnQ
These things can be so linked, one or other or both!
Ill keep posted here how we go on 
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