I didn’t have vascular symptoms initially, but they came on quite quickly, so I did some research on here & online, & worked out what I thought was wrong myself! I asked the local consultant about it & he didn’t believe in vascular ES, so I asked to be referred to Mr Axon. He did seem quite knowledgeable about IH, & was especially interested in the pulsatile tinnitus I was getting- he’s done research into that. So he organised the CT, & that confirmed it.
Thanks Jules, am interested how you rapport with your dr for this, did you ask the consultant who didn’t believe in vascular ES to refer you?, would you mind refering me to a specialist?
Have you heard of any previous members knowing a maxillo facial who may know about vascular ES around Birmingham? is vascular es very rare in England?
thank you as ever 
Hi Peony, I have ES and I am on Mr Axons list for surgery.Due to Covid it’s been put backotherwise it would have been done by now.He’s the 6th specialist that I have seen in the UK.He is the first one to be positive and say that he can operate for me.The bone has grown back at an angle, pressing on my carotid artery and has pushed into my throat.I am putting myself into Mr Axon’s hands and have faith in him.I am on the waiting list for a total jaw replacement in a years time, this is unrelated to the ES, it’s due to arthritis.I will let you know when I go in for ES surgery.By the way this is at Addenbrookes Hospital, Cambridge.
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Hi Jan, thank you for replying, sorry to hear you are having to wait so long, would you mind sharing some of your symptoms, did they come on quickly?, may I ask the other 5 specialists were they all ENT? and are you near Birmingham? thankyou very much :
Jules I meant to ask how quick did your symptoms come on? did you have more classic ones before coming on slowly?
Thank you for posting this pic, Natty04. I have annotated it to help Peony see where the styloids are.
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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.
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Thank you 
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 
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 
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
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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
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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 
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 
**
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…
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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
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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. 
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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.
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