I’ve been lurking for a week or so reading and absorbing. I know you’re all very busy helping people with diagnosed ES, so I’ll get straight to the point with my questions:
There’s a possibility I have ES (possibly vascular). A neurosurgeon (who Im seeing to deal with the pain) looked at old MRI/CT scans a few weeks ago and commented I have an elongated styloid process on the left.
My symptoms are: problems swallowing, lump in throat, headaches, pain in neck (mastoid area), pulsatile tinnitus, inability to lie down or apply any pressure to the left side of my head/neck as it causes problems with my left arm/leg, when lying on left side my blood pressure increases to 205/110 (heart rate remains stable at 65bpm) and I feel as though my head is going to explode, coughing, sneezing, laughing and going over bumpy areas in the car send me crazy and cause severe pain, and the list goes on.
Having read general ES symptoms, I seem to fit most of them but I don’t have any pain at all in my mouth, just the swallowing difficulties and a feeling that I always have a lump in my throat. Without these symptoms, would you guide me away from thinking I have ES/VES?
What scans should I be looking to have please to see the styloid and possibly arterial issues?
Thank you for any help you can give. I will follow up on this group as soon as I have scan results and can book in to see a specialist (which I will research on this group).
Hi & welcome to the site!
If you’ve not already had a look at the Newbies Guide Section it might be worth a read about the common symptoms; here’s a link: ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
You will hopefully see that your symptoms are classic of ES- swallowing, lump in the throat, pain in the neck etc. Incidentally, I never had the swallowing/ lump in the throat feelings , but was diagnosed with ES because of neck pain.
There’s info there too about vascular ES; like the pulsatile tinnitus, BP increases when you’re laying on one side. head pressure etc. To check this a CT with contrast is the best scan to have, I don’t know how easy it would be to get one on the NHS or if you could pay privately?
I think ES as a diagnosis would definitely be worth looking in to (technically ES should be diagnosed if you have symptoms which you have, & an elongated styloid, which you also have!)
Mr Jonathan Hughes would be a good surgeon to try to get a referral to again if you can, Mr Axon at Addenbrooks is also experienced but very hard to get to see & seems to be restricted as to what surgeries he can do at the moment. @PatientD has had 2 surgeries with Mr Hughes, so you can have a look & read those discussions.
I hope this helps!
Hi and thanks for your quick reply. I’ll carry on reading through the Newbies section.
I’m having to pay for everything privately. To cut a long story short, I’ve been seen so many times by NHS neurologists who diagnose chronic migraine. When I try to tell them I have neck pain and list all other symptoms, they simply tell me that migraine doesn’t always mean the pain is in your head and could present in your neck or arm etc. They even wrote a clinic letter to my GP stating I think I have something seriously wrong with me and should therefore be referred for talking therapies to deal with my anxiety issues. Aaarrrghhh……I could scream but I guess you’ve been there.
Thanks for the info and I’ll update when I have results.
A note of encouragement, @NRuflove - quite a number of our members have been diagnosed as hypochondriacs who have extreme anxiety which was thought to be bringing on their symptoms. It’s quite tragic really as even neurologists who should be informed about the effects of irritated cranial nerves (which ES causes along w/ possible vascular compression) don’t seem to have a clue.
There are 6 or 7 of our 12 cranial nerves that can be impacted by elongated styloids - the facial, trigeminal, glossopharyngeal, vagus, accessory & hypoglossal (also maybe the vestibulocochlear). These are the reasons for the all-over-the-place symptoms of ES as well as possible compression of the internal jugular vein or internal carotid artery which can cause additional debilitating symptoms.
There are a series of videos on YouTube called Two Minute Neuroscience. Each nerve is presented in its own video w/ a short, understandable discussion about its location, function & dysfunction. Though the dysfunction list isn’t complete for each it’s adequate enough to help you note symptoms that are most likely being caused by your styloid(s).
Hi, I had a similar experience with Neurologists, frankly useless to me. I heard they diagnose patients they don’t help as having “functional neurological problems” but if 40% of your patients get this label- you are missing something. I gave up on neurologists & moved on to Neurosurgeons where I was able to make some progress as they could see my JVs were compressed on imaging (CT with contrast & head rotation -I’d add flexion too now). I have had to use 3 different medics to help me in 3 locations and 2 of them have helped me get referrals to their NHS practices for future help after losing medical cover/paying myself. Happy to share any info you’d find helpful. Have you had a CT scan yet? D
Following a private consultation with a neurosurgeon today, he’s referred me for a CT scan over the next few weeks.
He was the first to mention a possible diagnosis of ES so I asked him if he thought he could help. His reply was that most doctors don’t actually believe ES is a ‘thing’. He went on to say that a few doctors in the UK have removed the styloid but with poor outcomes - he didn’t elaborate what he meant by that.
I told him again how my life has changed over the last 6 years (in particular the last 4) and that I need help to move forward with a diagnosis/treatment. I explained why I think my issues are vascular but he didn’t comment.
I will have the scan, and dependent on the findings, I will either see the neurosurgeon again to discuss pain management, or I will be referred to an ENT consultant. If the latter is the case, I will look to approach Mr Hughes or Mr Axon privately, although I gather that is going to be another battle.
You’ve obviously had an eventful journey so I will sit and have a read later. Again, thanks for your response.
So frustrating! Mr Axon has published research papers about ES (they’re in the Research papers), so to say patients have poor outcomes is saddening- they have poor outcomes with poor surgeons, that’s all!
So many members have been diagnosed with anxiety
Mr hughes has been helpful to me. Mr Axon less so. How anyone can look at a scan that clearly shows JV compression at C1/styloid bone and say “it’s not a thing” truly puzzles me. Hope you find help. D
Following an appointment earlier this week with a neurosurgeon, he referred me for a CT scan of my head specifically to look at the styloid process. The radiologist has now protocoled the scan and said that no contrast is required.
As a private, self funding patient, I would rather get as much as I can from this first scan rather than have to pay to repeat it with contrast a month down the line.
Is it reasonable for me to insist its done with contrast?
Yes I would insist on contrast ( helps show vascular structures) and ask to do head rotation too. In UK London Bridge or Queens Sq can do that scan for you if they won’t cooperate. Important radiologist/ doctor is experienced & knows what to look for. I have multiple scans over many years and all of them missed JV compression until end of last year. D
If you’re paying for it yourself, it seems daft that they don’t want you to have contrast…like you say, you don’t want to be paying for another one, as well as the extra radiation. So I’d say reasonable to insist, yes!
I had the scan late today with no contrast. I will get the results next week. It seems a possible waste of money but it seemed the only way to move things forward.
I’m sure up I’ll be back soon with more questions.
I’d just like to say, thank you again for your responses. It’s good to know help is close to hand.
Following a CT scan (without contrast) in early December 22, the radiologist and neurosurgeon confirmed Eagle Syndrome. I have marginally elongated styloids (3.0 and 3.1 cm). He felt my symptoms (headaches, pressure feeling, dizziness etc.) could all be attributed to a vascular issue but felt he should refer me to an otolaryngologist (Professor Patel in Southampton).
I met with Professor Patel (private otolaryngologist) in early January. He said he could very easily agree to a styloidectomy, however, he believed there was a high chance this would not resolve my issues. When asked why, he detailed the vascular/nerves that were located in the area he would need to operate around and openly admitted it was a high risk procedure that he would not entertain without a lot of further investgations. He explained it would be a ‘2-man job’ and that he would first discuss my case with a Skull Base Surgeon and report back to me which is where I am currently at on my journey.
Sadly, despite seeing many NHS GPs and consultants combined with the very long waiting lists for NHS care, I have funded my recent health care privately. If Professor Patel does decide to proceed with a left side styloidectomy, is there anyone else on this forum that has had the treatment done private that can give a guide as to the cost of the actual operation, any further treatment they may have required or any other information you think would be of help to me?
Many thanks for reading and for any help you can offer.
@Jules Thank you. I’ve looked through @PatientD 's thread and have seen the costs. I just wondered if anyone else that had been through private treatment might also be able to pass on any info so that I had a few comparisons.
Just to add, during my consultation with Professor Patel, he did mention that if we did look to surgery, it would be external. I have no idea if he has done any such surgeries previously but I know there is a shortage of consultants even willing to undertake an external styloidectomy in the UK so I will be sure to keep you posted if I get any more info.
I’m sorry for your wait. We’ve seen long wait times for most of our UK members which is very frustrating when one feels awful!
@Jules mentioned Dr. Jonathan Hughes who is familiar w/ vascular ES & works to liberate the IJV so blood flow can return to normal. It sounds like Prof. Patel may not have dealt w/ vascular ES before. Is there any way you can travel to London to get an opinion from Dr. Hughes? I think that might be your best course of action to expedite your care. It would be sad for you to undergo a surgery w/ an inexperienced ES surgeon & end up w/ no improvement or feeling worse.
Just a quick update in case anyone in the UK is looking for a consultant that is sympathetic in diagnosing VES/ES. Don’t book a private consultation with Professor Patel at Spire Southampton!
During my consultation with him in early January he said my scans (without contrast) supported a diagnosis of ES (as stated on the report by the radiologist) and he was considering a styloidectomy to the skull base but wanted to discuss it with a skull base surgeon. At the least I thought he would be referring me for a CT angiogram to check out the vascular issues, however, this didn’t happen. Instead, eight weeks’ later (pretty poor service for private treatment), he has now notified me that both he and a skull base surgeon have reviewed my CT head imaging (without contrast) and don’t feel my symptoms are typical of Eagle Syndrome and that the scans don’t necessarily support such a diagnosis!
I’ve requested further information as to how they reached such a decision and I’m guessing I will be waiting another 8 weeks’, if at all, for a response.
It seems to me that if it had been classic ES, they would have helped but because it seems to be VES (which they haven’t so far even acknowledged exists), they are not interested.
Onwards and upwards … I’ve been in contact with Mr Jonathan Hughes’ secretary and have an appointment with him next week. Fingers crossed I have a more sensible consultation.
@NRuflove - I’m sorry for your poor experience, but perhaps it’s good that someone who isn’t acknowledging vascular ES didn’t operate on you. You may have had to have additional surgeries to get things right later.Thank you for the heads up about Dr. Patel. It’s tough when competent surgeons classify ES as only having certain symptoms & don’t understand there are a vast array of symptoms that it can cause & that varies by individual.
Following on from my previous posts, I’ve now seen Mr Hughes privately at his outpatient clinic at Spire Thames Valley (cost £300). His clinic letter to my GP acknowledges a possible diagnosis of VES and that although there is only marginal elongation of my SP’s, there is some difference in the angulation with the left projecting more inferiorly. He then says he is uncertain that I do have ES but is recommending I have a venogram to determine if there is compression of my vasculature and that he’d like me to see a radiology colleague at the Cleveland Clinic London (CCL) who has an interest in ES.
The venogram procedure (quoted as “IR cerebral catheter venogram and manometry” on my hospital paperwork) has now been booked for later this month at the CCL at a whopping cost of £6,050. As a self-paying patient, I was pretty rattled by the cost but feel it’s the only way forward.
Do any of you know if this procedure is the right one to either include or exclude VES? Has anyone had this before at CCL or anywhere else? Is it performed under sedation or general anaesthetic? I’ve read the paperwork and it mentions both so not sure what to expect other than as a day case, I will be admitted at 10.00 and discharged approximately 16.00.
