New Here ... not diagnosed yet UK

Hi Peony,

Great news about the Maxillofacial doctor. I think you’re doing an excellent job of asking questions & trying to understand how to address doctors you see. Mistakes get made, but we learn from them. I’m so glad she’ll be seeing someone who’s familiar w/ ES though some of her symptoms are different than those we’ve seen here.

Regardless, we are each uniquely designed i.e. nerves, blood vessels & other soft tissues don’t follow the exact same path in each human body; muscles & bones are shaped & move slightly differently, etc. That leaves each of us open to our body’s interpretation of how to respond to a negative stimulus, thus, two people may not react identically to the same irritant i.e. ES or other problems. Thus, her colorful tongue could be a new ES symptoms we haven’t heard of. We will be very interested to know what her ultimate diagnosis(es) is/are. Please keep us updated as you learn new things because it helps educate us as well.

Below is Natty’s scan annotated so you can see where to look for styloids if your daughter has a panoramic x-ray. You can increase the size of the image by clicking on it.

1 Like

Thank you :heartbeat:

I feel your disappointment! Keep pushing forward. It took me around 7 private consultants before I was listened too.

One consultant Richard Irving (skull base ent surgeon) I saw privately at the spire in Birmingham was the only one who had the right idea about some csf or flow distruption but then referred me to dr Davies for iih at the QE who was horrible to me and said I am too thin to have raised pressure.

I’ve been pushing for nearly 3 years and all this time I had no clue about my jugular vein compression or elongated styloids.

Does your daughters headache ease when lying flat or with legs raised? You could try the 24 hour flat test to see if her symptoms improve or worsen

Just to give you an idea from the opg dental scan that Isaiah kindly marked up. compared to what they look like on 3d ctv

The first pic is my right styloid and second pic is my left side

oh thanks Natty, its so dreadful this journey meeting these hurdles, and we are not medical, we just want help to be out of pain! I do wonder where the compassion part of medicine is, just to be treated kindly, and also, don’t understand if they dont know, how they cant refer to their colleague who surely they must know at the edge of their expertese? more often we meet, go back to the GP, which really isnt helpful to the GP as they are no wiser
what happened after Dr Davis?( what specialism is he?), would you mind saying which people you went to, and in your experience how you found them? We did find one and then saw dreadful reviews of dismissal when it wasnt his area
Much appreciated, and thankyou :blossom: :tulip:

It’s just beyond dreadful. I feel that unwell today, I just want this all to be over

I have seen

Richard Irving ent - not the most compassionate but the most spot on and arranged mri of brain and spine with contrast

Dr Davies neurologist qe (specialises in iih) awful experience. Basically laughed me out of his office with a diagnosis of tension headaches. Told me from a video I showed him of my nose leaking clear fluid that it was snot

I saw an ent in Droitwich (can’t remember his name sorry) again diagnosed with stress :woman_facepalming:t2:

Dr Simon Ellis neuro Stoke on Trent (specialises in csf leaks And head pain etc) the kindest most compassionate consultant I have come across. Arranged mrv for me and a blind blood patch to see if it would help. Still to this day is supporting me with my referrals and updates from Cambridge

Mr Axon - nothing bad or good to say but listened and did what I wanted to happen. I had to push thou. I think with Mr Axon he has to be very careful at the end of the day he is an ent and not a neuro. So the problem with vascular and intracranial pressure issues, this doesn’t come under his remit. So he likes the referral or diagnosis to come from a neurologist. It was purely based on the fact I have whooshing tinnitus that he expressed and interest as that is one of his specialities

I have also seen mr maloney ent at Halesowen. Such a lovely caring man. This was very early on so didn’t know quite how to describe my symptoms properly and also didn’t know what I know now from mri’s and ct’s etc diagnosed me with vestibular migranes

Hope this helps

1 Like

My first real breakthrough was paying privately with Kjetil Larsen at msk neurology. I booked a 40 minute Skype session and uploaded all of my mri’s.

He found so many things on my imaging that no one had mentioned, including the significant bilateral jugular vein compression. It cost me around £85

He can be quite blunt but if it wasn’t for him I would of never pursued this route and found out about vascular eagles etc. I didn’t even know what styloids were let alone that I actually had quite an elongated one

1 Like

so sorry to hear you feel so unwell today, but hold on to the fact that they now know what the matter is, so you can be helped, and the eagles is sortable, what a blessing :star2:

Interesting as not heard of Dr Davis, but we went to the headache clinic QE and they were who said not IHH after the eye exam. It is so hard has taken until now to think have drs really missed what was going on
so glad to hear you have the compassion of Dr Ellis, and he is supporting you through, we have a neurol at Qe who is the same, would be lost without him
We looked at the Dr Hauser - v intersesting, especially that also the vagus nerve can cause alot of problems - seems prolotherapy is a great help, so will have to see what transpires but really good to know what solutions are available.
How did you get to Dr Larsen? who suggested him or did you find yourself?
Ill have a look now, and thankyou :sparkling_heart:

Natty also what happened when you got the outcome and ideas of Dr Larsen?

Natty we have looked at Larsen’s information - absolutely fascinating - which goes along with Dr Carrol in Stanford US, about an issue of scanning ( not clear enough for subtle) possibly being a cause conditions are being missed. We are thinking depending what is our neurologist makes of the mri we will get it looked at by Larsen, he is going to study to do medicine now but is still offering the on line assessments. Such a thankyou, looking forward to hearing how you came across him …

Peony- it sounds as if Natty has given you some good info & suggestions about who else to see…
You asked about my symptoms- I had classic symptoms of jaw & ear pain, pain turning head etc which came on gradually over a few years. The jaw pain did then get worse & had my teeth looked at, I got a dry mouth too & then a salivary gland stone, so got referred to the Maxfac team at Ipswich hospital. The scans & x-ray I had showed the elongated styloid. But the consultant was really ignorant about ES & not at all nice, suggested surgery only if I got suicidal with the pain, I don’t think he’d have done it anyway & wouldn’t have wanted him too…the vascular symptoms came on really quite quickly; I was doing loads of cycling & got a prolapsed disc in the neck, it was all at the same time so I wonder if the disc problem just shifted things a bit, & exercise increased the pressure, don’t know! I had a follow up appt at Ipswich anyway, so asked if I could be referred to Mr Axon & he agreed & was happy to get rid of me!
So for you, I’d see the Maxfac doctor & see what he thinks about your daughter’s tongue, then consider whether to seek a referral for maybe Mr Irving?
I don’t know whether they’d be any help at all, but did see a documentary about some cutting edge skull base tumour surgeons/ neurosurgeons at the Queen Elizabeth hospital in Birmingham; Mr Shaz Ahmed & Mr Alex Paluzzi. I haven’t a clue what they’re like, if they know about ES or if they could help, but might be worth a try if you don’t get anywhere…

1 Like

Oh thanks for this Jules, so terrible that you had to be suicidal before he would consider treating, blimey! bit late … You do get a sense of ’ I wouldn’t want to be in your hands’ which is pretty shocking
Trust is a big thing, to feel understood.
Yes good idea we see what the maxo brings - can I ask about your attitude in consultations - would you ever give a previous clinic letter from a dr you felt laid out your case clearly? Or are you more for going through your case there and then for the 100th time? We really struggle with that, especially as been complications, and feel we miss things and dont know what is relelvant.
Must say the link Natty sent for Kjetil Larsen very intersting, more compressions that can cause pressure on the jugular in the shoulder and collar bone, so this we will give to our neurolgogy too.
You have all been so kind trying to help and sharing your experiences, good and bad, we feel very supported, thankyou so much to all :star2:


Hi Natty04 -

I think both of your styloids look long & the left side looks thick, too. My right one was thick & my left one long & skinnier. Dr. Samji chose to take the thicker styloid first even though my left/skinnier styloid was causing most of my pain. Both are gone now so that’s water under the bridge. :clap: :partying_face:


I think that you have to be prepared to go through the whole story again I’m afraid…I wrote down all my main symptoms, plus all the testing I’d had done so that I didn’t forget anything, I know how hard it is to remember everything. My hubby was helpful to have with me for that, & I agree that doctors can be intimidating, it’s nice to have support! Read up as much as you can beforehand, that’ll give you more confidence.


Thank you for your kind words. Until I speak with mr axon I don’t think I will believe it just because I’ve had so many dead ends

Once I had my Skype session,
Kjetil wrote me some notes with the findings. I then passed it on to dr Ellis who looked at my imaging again and agreed with findings of optic nerve sheath dilation etc

I then explored the jugular vein compression from Kjetil’s findings and that’s when I came across eagles and mr axon etc

I have spoken to Dr Carroll via email before.
He is a very nice man. Gave me some opinions on my images.

Good luck and keep on going :heartbeat:

1 Like

Hey @Isaiah_40_31 I don’t know why but I discount the left side as normal and just focus on the right side. But yes you are right both sides are thick and causing bilateral compression. Although right side is definitely worse and also being my dominant jugular I’m hoping he would remove that side first.

I also have some suspicious cranial leak/bony defect areas from my scans. Not going to mention this to Mr Axon yet as want to sort the jugular stuff out first.

I’m so glad it’s water under the bridge now and they are out :grin:

thanks Natty, so when you took the notes to Dr Ellis, he was fine that you had found this second opinion yourself, and he ’ approved’ of the source ie Kyetil, no problems?
Yes, someone had mentioned CSF leaks and the link for Dr carroll, amazing how he gives his email at the end of the talk! and so passionate to help people, really restored us to know there are some wonderful practioners in the world. Good to know you thought he was lovely, it doesnt seem the problem we have at the moment, but worth knowing about. Do you get more headache lying flat? hard one if you have csf as that can help flat, but vascular es would be worse flat?? :sparkling_heart:


Natty have quite a few questions if you dont mind, am so interested how did you find Kjetil, was it a recommendation on another forum or yourself researching? also how did you come across Dr Carroll, through the csf leak forum? Another member on the headache group posted a link to his video which I watched, and thought he was so inspiring, particularly that he was working on imanging not seeing all the leaks he was getting from the POTS clinic.

So was it on Kjetil’s imaging that your leaks were seen? How did you get to Dr Ellis, your own research and asked to go to him? So interesting that Dr Ellis agreed with Kjetil and your neurol about your optic dilating, but the opthalmology didnt!

You asked if my daughter is better lying down, NO! that has been one of the worst symptoms, she hasnt been able to lie flat since her headache began, sleeps literally sitting up with bean bag sausage wrapped round to keep her up; also never been able to bend forward; any exertion ( so has had to walk slowly) all made her headache like going to burst, this all went even worse a year ago, (after going to the dentist for a checkup)and she started to get pain turning her head and feels sick, struggled to walk up stairs, even walking really slowly now is terrible, so something started to go worse and has really stuck there. She also developed really bad back ache, after her headache started, they havent got to the bottom, at the moment saying ’ central sensitisation’ due to chronic headache. We are waiting for a rhuematology appointment.

Interestingly after looking in the resources here, how the styloids might crystalise? there was a reference to systemic conditions …( some medical word I can’t remember) I clicked through and it came to ankolysing spondylatis as a possible systemic cause of crystalising, . AS is an arthiritis of the spine, hips more common in boys, but is in girls also and can start in your teens, so be very interested to see if that( or likely others we have not heard of) can be considered. She has to have a boiling hot water bottle all the time on her back, just to cope.
Our thinking possibly is, thinking out of the box; could be a virus( she had about 6 months before her headache, then started aching in joints which has stayed)so it could have set off this arthritis; and if she has ES vascular, then the vagus nerve could be suffering, which has let alot of inflammation happen and run riot, and given the persisitng headache, as well as pinching a vein/ artery of the ESV.
So the more we find, it actually means we can think back wards, up to now everyone seemed to focus on the headache, and she just isnt getting better, and medicines giving more headache, but not taking all the other symptoms and seeing if they are linked - until this prof neurology we now have who is starting to try and join up
So grateful of all of you, and all insights trully welcomed
Here’s hoping …

1 Like

Hey Peony,
I’m Merl from the Modsupport team. You’ve been given some great information here by all the members involved, but I have to agree wholeheartedly with something Jules has said above “…be prepared to go through the whole story again I’m afraid…I wrote down all my main symptoms, plus all the testing…”

For those of us unlucky enough to have to manage a rare condition this repeating, repeating and rep… happens a LOT. I have learnt to keep my own records of symptoms, medications, tests, scans, medical treatments, ‘alternative treatments’ with every dr, professor and wizard I’ve seen and their reports. Document it all. Sometimes our verbal information is seen as hearsay, if it’s documented, it’s no longer hearsay. It can also help show a pattern over time, if there is one.

“…doctors can be intimidating…” to the extreme. Some people tend to place some dr’s on a pedestal and some dr’s think they deserve that pedestal, placing themselves above the rest of us. In the past I have questioned their attitudes (which they do not like), they do deserve respect, but so do we the patients. Due to this I tend to stand my ground. We are not in the position we are by choice, so the idea they can pass judgement because we choose to be here is arrogance personified and I won’t play that game anymore. Initially, sure, I was ‘Yes sir. No sir…’ following every word they said, but after many years of medical drama I gave up playing their game. I deserve respect too… …in fact, no. I demand it. Just like they do.

Merl from the Modsupport Team

1 Like

Thank you so much Merl for popping up and sending this, its absolutely what we need a the moment. We were really thinking where have we gone wrong, why are we being dismissed so readily by so many. We will straighten up again, and take our place as you say - none of us are because we chose to, we unfortunately are by happen chance and genes more likely… thanks so much for these words of strength