I’m pleased that the private neuro was helpful, but so frustrating the clinic won’t accept you…I thought that under the NHS you’re entitled to request where you go for treatment, so if you’re up to it it might be worth kicking up a stink about it, here’s what the NHS site says:
Your choices in the NHS - NHS (www.nhs.uk)
If there’s nowhere local who are knowledgeable about ES then you should be able to request a referral elsewhere by the sound of it…I hope that you can summon up your fighting personality again & push forward…you’re not alone, we’re here to listen and support you 
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Update from @Mcwelly:
Good evening all, quick update : went to see mr Axon on May, what a nice man? He had looked through my scans and was able to dispel my fears about my left IJV, yes it is big but he thought was within the realms of normality and not a problem or about to pop!
He also said that my styloids? Whilst elongated would probably not significantly help me by their removal as my main problem is “spinal disease”. First time someone has put this forward without woolly ambiguity, he noted a tonsil stone but could not say why I keep getting throat and ear infections and pain. More on this below…. Meanwhile he’s recommended I get referred to a rheumatologist, which my GP will do. Here goes another long wait I suspect.
Regarding the throat, I’ve read that many cases of sore throat and ear pain are caused by silent reflux and I wonder if this may be at least a part culprit? I had severe GI symptoms after last lot of co amoxiclav. Brought under control by a few weeks of omeprazole and regular gaviscon. My sore throat and ear pain has practically gone. I also squeezed out a tonsil stone on each side and pus from behind the left tonsil, which has also shrunk. NB I had my tonsils out 60 years ago but one has partially grown back and I have pits left which was where the stones were. Hope none of you were eating your food whilst reading this!
Happy evening all xx
Ps neck and head pain still bad and chronic.
@Mcwelly - I’m glad you had a good appointment with Mr. Axon. When there are multiple problems at once, it can be hard to know where to start. Since he pointed out your spinal disorder, for you, taking care of that may be a good initiation point.
Based on the experiences of so many of our members, I would not have dismissed your elongated styloids as a potential cause of at least some of your symptoms as readily as Mr. Axon did. I think if you still have persistent throat pain & reflux problems after your neck is cared for, revisiting ES is worthwhile. The vagus nerve often suffers due to the styloid spikes & it’s notorious for causing gastric distress among its symptoms when its distressed. Even the sore throat can be vagal but more likely has a glossopharyngeal basis.
I hope a miracle occurs & your neurology appointment isn’t booked as far out as you anticipate.
Thank you for sharing your update with us. I will keep you on my prayer list & hope you will update us as time passes.
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Thank you @Isaiah_40_31. I totally agree with you and no surgeon would recommend surgery where there was doubt - as PA said - “not significantly improve symptoms”. So I hope at least that a rheumatologist might help with some it.
I am still awaiting response to my complaint of why styloids were not even mentioned in my CT report requested by mr Hughes in November. Even as an incidental finding, there was no mention, nor of the IJVs. Apparently the radiologist doesn’t use 3D views, it’s not something they do! Why not? Neither JH or radiologist have so far answered any of my questions or concerns.
I will keep you posted 
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@Mcwelly - Keep after that complaint! Call the radiology & JH’s offices weekly if necessary. They’ll get tired of hearing from you soon enough & you may get the answer about your styloids sooner than later.
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Good morning all: Saw pain consultant after a year’s wait! Seems I have fallen through the cracks and my GON block should have happened last year! He spent time looking at my scans (paid for by me and transferred to NHS). Was genuinely compassionate and empathetic when he heard about referrals refused, delays etc etc and will try and push things his end. Will likely need surgery on neck ultimately but the injection may give me relief and breathing space.
The big big surprise: he thinks I likely have EDS!!! I did wonder over the years due to numerous injuries and odd symptoms plus stretchy skin and hyper mobile patellae! Only taken 69 years to find out.
I’ve complained to PALS about my long awaited ENT appt being cancelled so close to the date, it’s like a door suddenly slamming in your face- rescheduled for November which is 11 months for an urgent referral.
I started pregabalin 25 mgs which I take at night but honestly, small dose has made no difference as I still need the dihydrocodeine and I’m a bit worried about mixing the two together.
JH never replied and I’ve come to the conclusion that unless I pay, he won’t! I’m not being fleeced more for what should be simple after care.
Anyway, I feel somewhat happier and relieved that the slow wheels of medicine are moving a bit for me.
Have a lovely weekend all 
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I’m glad that the pain consultant was helpful, hopefully it’ll restore a bit of faith in doctors, you’ve been messed about so much! Crazy it’s all taken so long, & the EDS diagnosis too…I hope your appeal to PALS helps gets you seen a bit quicker by the ENT.
If the pregablin doesn’t help, maybe this could be upped a bit, do you know? Did the pain consultant have any other ideas for what you could take?
Maybe others with EDS might have some info to help you, I don’t know how helpful the UK EDS Support group is?
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Thank you for your reply 
. I will contact an EDS support group. NSAIDs aren’t suitable for me and facet joint inj was suggested. Yes, I’ve complained to PALS. I could up the pregabalin but not keen on the sedation and dizziness plus mixing with opioids? Not being able walk or drive or function would be awful!.
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I’m really glad you’ve finally seen a doctor who was empathetic & had an idea about the basis of all you’ve been struggling with. I hope he is successful with pushing for you to have long delayed appointments & receive denied referrals soon (relatively speaking).
Did he give you an injection in your neck for pain? If so, I really hope it’s VERY helpful in relieving your pain.
I can imagine the EDS diagnosis was a surprise, but as you noted, it makes sense in light of the evidence you’ve had in your body.
You’re wise not to mix medications especially when each one causes side effects that are a bit debilitating for you. I hope you’re able to find the right combination of medication, & maybe PT to help relieve your symptoms enough that you can live more comfortably.
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Thank you @Isaiah_40_31 - no he didn’t do the injection there as he does them guided under USS but I hope it won’t be too long. He looked though my notes and looked in great detail at the MRI of the neck, including measuring and changing views etc as well as letting me speak, taking proper notes and the ultra rare thing now - of making eye contact!!
I hope the physio can be more tailored now and I am seeing a chiro next week who will initially look through my scans and is aware of EDS and ES.
To be honest, the most benefit I get is from the mild opioids (dihydrocodeine 30), I tolerate this well. The standard dose meds of carbamazipine, gabapentin are absolutely horrendous and completely knock me out - as does a small dose of morphine. I always wonder why medications are not closer titrated to the patient or eight, are, sex, ethnic background?
Our NHS is in a mess and a new government has a huge task in tackling it against a backdrop of a increasing aging population and more chronic and complex conditions so I know I must be aware of this.
The information and support I’ve found in this group has been phenomenal as without it, I wouldn’t know what I know now and I don’t know if I could have carried on without ending up a zombie or worse 
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I hope that the injection can be done without too long a wait, imo they should bump you up to the top as a priority given you’ve slipped through the cracks & waited so long already…so pleased that you had such a good experience with the pain consultant, shame there aren’t more doctors like him!
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Sadly, he will be retiring soon 
Thank you for the explanation re: injection, @Mcwelly. I’m glad it’s done w/ care.
It’s also good that you very aware of what types of meds work best for you & what doesn’t so you can use what’s most beneficial & skip the remainder.
I hope the pain med specialist stays in practice until you no longer need him & that the new gov’t. takes the NHS problem seriously & doesn’t stick it on the back burner.
I’m so glad this group has been very helpful for you. That’s the highest compliment we can receive! 
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