Natty04 - I’m so glad you have confirmation of what you & we suspected & an appt w/ Mr. Axon to look forward to. I hope he can schedule your surgery ASAP once you see him. 
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Fantastic news, Peony! I’m sure he’ll be able to help you make some sense of your daughter’s situation & will prescribe the appropriate scans for confirmation.
I’ll be praying for good & helpful info. for you. 
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Hi Natty, thank you so much for posting, you sound as though you have had a tremendously difficult time , but are on the way to sorting things out which is so heartening, can I ask did you see Dr Axon first to decide on the CTv? How long ago did your symptoms begin? my daughter has slept on a wedge & pillows almost sitting up, since her headache began. Can you say something about loosing all energy - she has been having these bouts of ’ energy drains’ happening more - all energy just goes, our neurol has asked her to chart when happens, see if there is any pattern, can be just sitting, or as falling asleep, Thanks v much and will update how things go with Dr Axon 
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thanks so much Isaiah!, will update all later
we feel very nervous, have seen so many ’ specialists’ that just pass her on, and our hope is dashed. trying to be calm, this is just another day, put on the table and rule in, rule out. But of course deep down you pray this is the answer and will be on the road to out of pain. If it isnt ES, he may well know what it could be, so hard all the waiting, then going for scans, but you all have been here :crossed_fingers 
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thanks for all your support Jules, will let you know later
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Hi Peony
Thinking of you all for today.
So my symptoms started completely out of the blue when I was 37 weeks pregnant in May 2018
I am nearly 35 and I was 32 at that time. Up until that point I had never had a history of headaches, migranes, diziness or ear issues. I woke up feeling really off in my vision and my ears were really blocked. Then the tinnitus started and then over the course of the week I was extremely dizzy with bouts of spinning vertigo and 24/7 derealisation. Then I would say a week or so after my head would feel like it was going to explode and I get bouts of extreme pulsing head pain on the slightest movement.
They said it was labrynthitus then after 6 weeks there was no improvement so then I was diagnosed with vestibular migranes. I tried several migrane preventatives of which none helped. Then I started to notice when I would stand in particular I get a rise in pressure and my chest, neck and head restricts and it feels like flow trying to pass through a pin hole and then I will hear this Doppler type vibrating whooshing. Then nose started leaking. They suspected a spinal leak so I had a blood patch and this didn’t make a difference so apart from tinnitus becoming louder.
I then had my mri reviewed by Kjetil Larsen at msk neurology who pointed out that I had pretty significant bilateral jugular vein compression and optic nerve sheath dilation and some other signs of high pressure. However ophthalmology said all normal but my neuro agreed that I had optic dilation on mri and some flattening on the back of my eyes.
Someone mentioned eagles on another group to me. I had never heard of it so I booked with mr axon. Who was direct but thorough. I also mentioned to him that I get pain under my jaw almost like a gland feeling but mainly on my right side and I get a hoarse voice a lot of the time. He then suggested a Ctv with contrast so I was put on the nhs list but as you can imagine the wait is long especially with Covid.
So I made the decision to have it done privately for £1185 at the spire Lea private hospital in Cambridge 10’days later
In the interim I asked my dentist if they could do an opg scan £20 so I could see for myself if styloids were visible and they were. But hard to gage the severity
Got my results a few days ago and here I am now awaiting a follow up to discuss the compression And next steps
I have a long history of nocturnal teeth grinding since having braces and watched an interesting video on YouTube from Dr Hauser at caring medical who talks about eagles & earnest and how repetitive traction can cause the styloid process to grow. So maybe that’s what happened for me
The severe episodes I feel like a diabetic who is going low. I often need something sugary and I will shake. I think it’s when my blood sugars suddenly drop and I have low blood pressure in general. And I become completely detached from reality.
Sounds so crazy.
We are all thinking of you for today. If your daughter ends up having a ctv I would ask for a copy of the scan on cd. I got mine the same day. I can then help and talk you through a few programmes to use and how you can convert them in to 3D whilst you await the results.
Sorry for the waffle but some of it may help.
Keep us posted and good luck
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Thanks Isaiah
I can’t thank you all enough for your support and guidance
We literally become our own doctors don’t we. I would be so lost without these groups. The information and support is priceless
Will update soon hopefully 
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Thanks Natty, so yours started suddenly too, was your migraine intermmitant or constant? very difficult when the professionals differ, but you went with the neuro and he was right. Are you near cambridge? am thinking will we be okay having a ct done locally that Dr Axon can review, also do you know if the Ct can be done upright by any chance?Out of interest, who did you go to for the blood patch for your leak? Very interesting about the grinding maybe part of the cause, I ll def look at Dr Hauser video later, thank you so much again for sharing your path xx
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Mr Axon does like a CT venogram done a certain way, I did have to go to Addenbrooks for mine rather than have it at my local hospital.
It was intermittent but I never ever feel normal. It’s like an intense sucking imploding pressure and I have terrible sucking on my eyes like they’re trying to pull inwards. Must be cranial nerves being effected
Yes came on suddenly
I am still under dr Ellis also at Stoke on Trent who specialises in csf leaks
Hope the appointment is went well
Hi all, well not great news, had a zoom consultation with Dr Axon this afternoon, I d sent some background clinic letters from neurology, he asked to hear my daughter’s symptoms from herself, she struggles to remember much, but gave what she could, and he basically said she didnt have any of the classic symptoms like stabbing in the throat, wooshing ears - he did not think she has ES. We did feel we got off on the wrong foot by saying we heard about ES through a forum, and then we had asked our neurologist, he did not seem impressed. He did talk a bit about intra cranial pressure, asked if that had been looked at - we explained had been to the eye clinic/ headache clinic, he said it doesnt always show in the eyes, and acetazolomide doesnt always work - had she had lumbar p, no because she has central sensitisation. so really left us with, sorry he couldnt help, and maybe more looking in to intracranial pressure. We are very disappointed that there isnt a scan to be 100% sure, it has been such a tough path, also when you read of the rare uncommon headaches that they find is the styloid, after 10 years of migraine, so feeling wobbly unfortunately. We have a referral from the GP for maxillofacial as she has a blue/black tongue ( which we forgot to mention) - if others have not had ES, do they ever come back and say what other conditions might have been the cause?
this does feel like a whistle stop, and we don’t feel settled at all 
So sorry that you didn’t get any where today, very frustrating for you…maybe you’ll be able to get answers through the Maxfac clinic. I presume Mr Axon had been sent all your scans to review? It is hard to remember everything at appts; I used to write it all down or would forget symptoms. I did get diagnosed through a Maxfac appt- I had a suspected salivary gland stone & jaw pain so had scans & a panoramic x-ray through them, although I was very lucky to see someone who knew a bit about ES, although not that much, that’s why I got to be referred to Mr Axon. So keep the hope that you’ll get answers…
In the Newbies Guide Section we have a few ideas of other conditions with similar symptoms; I’ve attached a link, it’s just names though, so have fun googling them!
Thinking of you both, & hope that you’ll stay on here to let us know how you’re getting on 
Thanks very much for your thoughts, will have a look at the link, thats helpful - yes, the maxillo facial might show a direction, why couldnt your maxfac clinic treat you when they diagnosed ES?
We ll certainly let you know how things go too, you ve all been really supportive.
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I second all of Jules, sentiments, Peony. So disappointing!! A CT scan in hand would have been helpful. I’m sorry he didn’t send your daughter to get one. There really are no typical symptoms for ES just some that are more common than others. Too many doctors (even the experienced ones) make the mistake of looking for those rather than considering that each human is unique & that the same disease or syndrome can have totally different symptoms from person to person.
Do persevere with doctors until you have answers & workable solutions. We will look forward to hearing what you learn.
I was lucky that one of the registrars spotted the elongated styloid processes on my panoramic x-ray, & she called the consultant in- unfortunately although he’d heard of ES & confirmed it, he was still pretty ignorant about it & the benefits of surgery. He didn’t believe in vascular ES either; luckily I found out about Mr Axon on here, & was able to get referred to him.
Sorry to hear this peony. I think I only got through with Mr Axon because I do have whooshing tinnitus.
I suggest trying to get an opg panoramic x-day done at a local dentist. To see if the styloid process can be visualised
It only cost me £20 but I found it helpful! That was mine. Then after the ctv and converting them to 3D I could get a clear picture. Especially how big my right side
thanks for this Natty, its just so disappointing, I ve read several articles where they state there are huge variety of symptoms, not at all ’ classic’ , we feel really despondant to the attitude of alot of doctors that just feel can’t get you out of the room quick enough, because it is not their specific exact area, there seems so little genuine curiousity and care. Our blessing is the neuro nhs we have, we feel sorry for him how hard he has to work to get things on our behalf too!
We re picking ourselves up today and trying to carry on…
Good idea with the x ray - the max sec did say he will want to do some mouth xrays so this is good, can you draw the shape on where you see the ligament? thankyou! 
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Yes absolutely Isaiah, for sure we would have really appreciated a ct scan, just to know 100%. That s why we felt vulnerable. I wish now we had said are you 100% sure. We feel we need to be less placid, and more questioning, and be more ready to ask specifically if not this, then what could it be, any ideas, who can we go to who might know more?. Instead we go, completely trusting that they will be fully knowledgeable, to be honest feel quite intimedated, it is such a difficult balance doctor to patient, as you all know. Better when you can build a relationship but this seems to happen rarely for us. Seem to have gone to one specialist after another, one appointment a few have said genuinely I am so sorry, the trouble with specialists is that we are very specialised!
We looked last night, luckily as we have this referral for her tongue from the GP, we managed to find a maxillo facial who has been involved in ES surgery, not for headache specifically, but at least has seen it a few times, and been on a few papers, so he is at the hospital we were going to go to, there were 3 maxillo there, feels like a good choice, and at least we can ask him specifically about it if it doesn’t come from him in the first place.
We re all going to go to the appointment too physically if possible, not do it on zoom as we need to go to the Upright MRI anyhow.
Thank you so much for your care, underststanding and support at this hard time 
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Jules who was the first person to day about the vascular es to you? was that Dr Axon?