While I dont know your full story and im just at the beginning of my journey with this , I completely emphasise with you about being aware of skeptical people as I have my own previous trauma with the nhs and im also audhd. I was medicated with the same adhd medication as you and experienced the same symptoms so its nice to know im not alone. I wish you all the best in the future 
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Hi, & I’m glad that you’re back…sorry though that your finances are different now & you can’t afford to have the CTV that Mr Axon ordered- I can understand that you don’t want to ask your family for money for it, it would help you in your journey to find a diagnosis but if it confirms IJV compression then you’ll still have the hurdle of getting surgery. Could you see what happens with your follow up appointment on the NHS with the head & neck team, & see if you can persuade them to order it for you, & take it from there? Maybe print off a research paper which does support your symptoms, like one of the ones I mentioned before, & I think there’s one written by Mr Higgins & Mr Axon which might be helpful? If you don’t manage to persuade them, then you could see about asking for help from family? And I would see if you can get a referral to Mr Axon on the NHs too.
One of our previous moderators gave the advice to stick to the main symptoms & the most well-known ones when talking to doctors - we know that there are some very strange and seemingly unrelated symptoms which are caused by ES, but some doctors do find this scary and will quickly dismiss a patient if they feel they are maybe having ‘health anxiety’ , wrong but it happens. It also shouldn’t happen, but I wonder if when patients are very distressed by their pain and symptoms if that doesn’t scare the doctors as well? Too much pressure on them to cure the patient? But I completely agree that while perhaps being open to skepticism might be helpful for a doctor to make a diagnosis (I’ve been in the medical profession a long time ago so I do know you can’t take everyone at face value), but like you say, it shouldn’t be open…
Mr Axon does do C1 shaves though if needed.
I would say though when you do see your max-fac team, unless your wisdom teeth are causing horrendous issues I wouldn’t think about getting those removed at all; we’ve seen so many members on here who’ve had symptoms either triggered or worsened from dental work…
I’m sorry, I don’t feel that there’s any advice really here for you, it’s a decision only you can make, but hopefully you’ll know you’ve been listened to & that we understand where you’re coming from 
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@Jules Not at all, you’ve given me invaluable advice on how to proceed and put up with my rambling and moaning. And on top of this, read all of that! I couldn’t ask for more, really sincerely thank you 
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You’re right it’s a decision for me alone to make. I’m just yet to catch a break with the health problems beyond my OSA diagnosis; and I’ve already spent quite a bit on rheumatology, ENT and diagnostics. It’s made me really hesitant overall and lacking in confidence; especially even more so when it comes to spending the money of others.
I think as you say, the best move forward is to see what I can persuade head and neck department to do; then reevaluate. I was reading another users experiences on here yesterday, I think it might of been @Rosie ‘s experience with Dr Axon. It seems that having a CTv done outside of his protocols can still be useful and enough for him to proceed with confidence at least in clear cut cases. That gives me some confidence requesting a CTv through head and neck. It will at the least show the extent to which styloids are calcified; if not the compression itself.
Do you or @Rosie know how important posture/positioning is when it comes to having a CTv performed? I’m trying to think ahead to optimise any scan they send me for to make sure it’s not wasteful. I would imagine, it would be better to have it done in postures that provoke symptoms? (for me neck rotation to affected side and/or flexion). I’m wondering if this is something that’s a standard for Eagle CT protocols or will need to be requested/advocated by me.
With regards to my appointment with Mr Axon, I don’t think it was so much that he felt the pressure to cure me. That was probably present right at the end when I divulged my suicidal feelings - but it literally was as I was leaving. But up until that point, it was probably more how scatterbrained and all over the place I was presenting that was the problem from his point of view. I can imagine many clinicians just don’t know what to do with someone like me.
Incidentally, what you said is very insightful; it was my over sharing that was part of the problem, along with his displaying skepticism. I’m oversharing in this thread haha! 
I need to try and keep that oversharing to a minimum, but it’s so hard, it’s not how I naturally am. Not how I talk. Nor how I write.
This is compounded by multiple reasons. As an ADHDer, if I am able to remember (which at the moment is not a guarantee like it used to be), it as it always has been, is through feeling. I don’t have a short-term or medium -term memory apparatus like a neurotypical. As such what I remember comes out organically as I am talking or writing. How well it does I’ve noticed is directly tied to how I feel. It’s not sequential like a neurotypical, nor somethign I can bring up in my mindseye to check, and it is difficult to hold things back considering how it works and especially with my cognition the way that it currently is. This is also compounded by executive dysfunction and then on top of that the anxiety that comes from these appointments. I must look like an absolute hot mess :P.
I’ve probably been too harsh and critical of Mr Axon. With the way my mind is, I find myself reacting emotionally to situations and getting caught up in that negative feeling rather than reasoning my way through it like I used to with ease. The lack of internal monologue now is part of that problem, it used to be so loud and now it is almost absent.
I can see that these conditions make me a very difficult patient to treat. It’s just very hard not to feel upset and sometimes angry when, it is the norm that this barrier will be there in most consultations with doctors. Whilst it’s not really their fault, the truth is also that I’m being consistently let down by a system not designed with me in mind. Both things are sadly true.
But also, I have to keep reminding myself despite my experiences that these clinicians are people, with their own limitations in time, expertise and experience. It would be unfair and ridiculous to expect a fantastic surgeon with oodles of experience like Mr Axon to also be an expert on access to healthcare for those with neurodivergency.
As usual I have overshared. Thanks for taking the time out of your day to read my diatribe! Let’s hope I can keep the oversharing to this board and out of the consultation room eh?
@Princessxharris <3 sending you lots of love and understanding. When you as a neurodivergent use mirroring to 1. stimulate your brain into action because of dodgy dopamine receptors and 2. (I’d imagine in your situation) mirror social cues so as to mask more effectively, skepticism from a clinician can be the mindset that destroys a neurotypical brain in a healthcare setting!
It’s a really difficult situation to be in and I hope that you find your way through going forward. I’ll try my best to keep this thread updated with any progress I make so that you’ve got something to refer to and if there’s anything I can do to help feel free to PM me.
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You are right on target with your last sentence in this quote, @byebyetwenties. If the referring doctor will add to the CT request that it should be done w/ contrast & dynamically especially w/ your head in the positions that provoke your symptoms, that is ideal. Unfortunately, there are radiology clinics that either don’t/wont do this or don’t know how (deep SIGH!). I hope you’re able to get the specific scan you need so you can finally have diagnosis & direction to begin firmly heading for treatment.
BTW, your “diatribes” are interesting, not just meandering words. You have a lot going on, & it’s fine to overshare here instead of during a doctor’s appointment. 
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Dealing with doctors is hard enough when you’re neurotypical, anxious about symptoms & suffering, have brain fog & are tired, let alone when you’re neurodiverse, so I feel for you!
Isn’t every system geared towards neurotypicals & not the neurodiverse? I read info from Autism & ADHD Suffolk about the prediction of growing numbers of people with neurodiversity, & I think you are predicted to be the majority in the future, so maybe there will be changes!
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@Isaiah_40_31 Thank you for your advice and reassurance. I’ll be sure to push for a dynamic CTV at my next appointment. I remember reading somewhere about Mr Axon having a very specific protocol for the radiologists at Spire and at Addenbrookes. I’d imagine a dyanmic scan makes up the bulk of that. Is there anything else you’ve learned on your travels that I might need to request do you think?
@Jules You’re going to get me talking your ear off on this subject if you’re not too careful (in fact I’ve rambled to the max again I’m so sorry…)
Systems and workplaces are pretty much all not designed with us in mind yeah. Although being self-employed or at least in an environment with a huge variation in tasks, and being on your feet, seems to be really geared towards ADHD in my experience.
I thrive in environments where I can have my fingers in lots of different pies and bounce from task to task. It speaks to the hyperactive component of ADHD; and can make me very productive. Assuming you can get over the hump and start the thing!
In terms of demographics, neurodivergents aren’t actually growing in size over time. I understand why you’d think that and it can certainly seem that way from the outside with the increase in diagnoses and people being open about themselves. But we’ve always been there at roughly the same levels; for hundreds if not thousands of years. There are some studies that show a tiny increase through linear time though which is thought to be due to environmental factors; but it is small.
What is changing is the way in which we define neurodivergence and the wider availability of services to diagnose and support. Go back fifty years, and almost no one was detected because there was little awareness. Interestingly though, ADHD was first mentioned in scientific journals as early as the 1890s!
What’s also changing is the number of situations and problems that cause ADHD like symptoms increasing. So again, it looks like the population is growing on paper, but in reality it isn’t. Sleep apnea is growing due to obesity for instance and that can produce very similar symptoms. Or, social media addiction is growing and causing dopamine deficits due to it hacking the reward circuits. All these things look like ADHD, but aren’t actually. ADHD is 85% genetic in expression, with a touch of environmental in utero factors thrown in and perhaps a smidge of childhood trauma (although this is also hotly debated).
I consider myself fortunate to be born during a time where it’s possible to diagnose and treat my condition; even if I was diagnosed rather late. Very fortunate. I struggle to think what so many neurodivergent humans before us must have gone through. So many untold struggles, so much self criticism and misunderstanding.
But on a positive note, there’s one theory I quite love about why neurodivergents have evolved to be the way that we are; but it’s not yet backed by all that much evidence so do take it with a grain of salt:
ADHDers usually come with different body clocks (late risers, late to bed often - this is noted in the literature), and we react calmly in a crisis (often stimulated by them in fact), we think outside of the box creatively piecing things together in ways others would struggle to due to our executive dysfunction and with this can come unusual insight.
The theory is that we served a crucial role in hunter gatherer societies.
Sometimes as the night watch men and women. Sometimes as those that kept calm in a crisis and could direct others when emotions boil over. We could also serve as excellent problem solvers in unique and unusual situations. I also think it’s even possible that due to our ability to connect the dots so keenly we may have been the shamans/healers of old.
But much of that doesn’t fit into a capitalist society built on repetition and specialisation. Modern society, both from a workplace perspective and service perspective, is built without the flexibility we require day to day.
As you might be able to tell, I used to moderate an ADHD subreddit so I’m well versed in supporting other ADHDers. If ever you see a user in need of an ADHD ear or voice, by all means give me a mention and I’ll be more than happy to help them out. It’s the least I can do considering how generous you’ve all been.
The only thing I can’t guarantee though is that I’ll be having a good day like I am today ;).
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Hello Jules and byebyetwenties I am “neurotypical” woman but I feel like you @byebyettwentiesbyebyettwenties when I am in front of these doctors who don’t listen us.
I don’t know what is the best way to explain our symptoms with doctors. I have follow your advice @Jules but it is really also a failure!
“One of our previous moderators gave the advice to stick to the main symptoms & the most well-known ones when talking to doctors - we know that there are some very strange and seemingly unrelated symptoms which are caused by ES, but some doctors do find this scary and will quickly dismiss a patient if they feel they are maybe having ‘health anxiety’ , wrong but it happens. It also shouldn’t happen, but I wonder if when patients are very distressed by their pain and symptoms if that doesn’t scare the doctors as well? Too much pressure on them to cure the patient? But I completely agree that while perhaps being open to skepticism might be helpful for a doctor to make a diagnosis (I’ve been in the medical profession a long time ago so I do know you can’t take everyone at face value), but like you say, it shouldn’t be open…”
I list only the main symptoms (pain throat, headache, dysphonia and blurry vision).For them dysphonia and blurry vision aren’t not eagle symptoms. If I tell them I have pain when I turn my head (symptom that I haven’t) I will be a “good” patient for Eagle syndrom. With only the four symptoms listed doctors write in their report I need to prune the symptoms !!
Do I have to lie to be heard, to be listened to , to be a “good” patient!?
If the symptoms are not the symptoms that doctors should be checked off on their pre-established list we are put in anxious category or depressed person! It is really crazy !
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You made a very good point, @Veroguilnec! It is extremely frustrating not to be “HEARD” not just listened to! I hope you’re able to get an appointment with Dr. Pagani & that he will not just listen to you but will HEAR you!
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Hello @byebyetwenties good to hear from you. I am currently waiting on an operation with Mr Axon under the NHS probably towards the end of this year. I was lucky enough that Neurology NHS where I was first referred over a year ago requested a CT angiogram with contrast, which was done in one position laying on my back. They discharged me stating that the CT was unremarkable. I was convinced they had missed something, so requested a copy of my CT. With this together with a dental OPG gave me enough information to question Neurology who then agreed my styloid was elongated and referred me to Mr Axon, although I did pay for a private appointment with him in the first instance. He picked up from my scan that my IJV was compressed by my C1 which he believes is causing some of my symptoms. I am waiting a styloid removal and C1 transverse resection with Mr Axon. He did not order any further scans as he said the CT with contrast showed what he needed to see. I can understand you being very emotional, I felt very similar. In fact I think I may have cried in the appointment in frustration at just needing someone to listen and take me seriously. You need to get the proof, so I would push for the CT with contrast at your NHS maxillofacial appointment. The contrast is very important as this shows any compression. My CT was specifically checking my arteries in my head & neck, but Mr Axon picked up the IJV compression from this scan and so did @TML on this forum.
Its very hard to keep strong and I know its hard to ask for financial help from your family. Hopefully you can get that all important CT ordered under the NHS, which would give some clarification for you.
All my best
Rosie
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@Rosie I am happy you have good news from Dr Axon. But t’s unbelievable that our exams are being misinterpreted. Yesterday as I said to the angiologue “How is it possible to have two opposing interpretations regarding the compression of my jugular veins?” He answered’ that is medecine”! 
I feel like we’re playing dice with our exams.
I
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