Is a kind, compassionate and all round top human being. A gentle sort but with a very keen desire to be the best at what he does. His sister funnily enough works in the NHS in a hospital in Glasgow.
Regarding the overactive nervous system bit, you’d know, I think what I’m describing but have never been able to fully get it confirmed is small fibre neuropathy from POTS. It’s just a constant feeling of buzzing & internal shaking depending on how much physical activity I’ve done and how much I’ve been upright in static postures. It’s also particularly triggered by putting my head into flexion a lot from doing general household chores in and outside, so I have to be particularly careful of my head position. It seems very likely that it’s my styloid/s irritating my sympathetic nerve fibres/vagus nerve within the carotid sheath.
Hi, I saw Mr corbridge. He does NOT remove to skull base. Nice man but I wasted money going to Reading clinic to see him privately. He asked skull base team at Oxford to help me. But got surgery done with Mr H so did not persue that option. D
I also just read you bought a viatom. I bought this one below which diagnosed my sleep apnea and gave me enough evidence to give to my doctor to refer me to my local hospital for a sleep apnea test. I shed you not, the sleep apnea device they used to test me for sleep apnea was the EXACT same device! I couldn’t believe it haha.
He referred he as my ves meant needed removal to skull base, which he does not do. Got no further in to it than that. I never saw any of Oxford team. They requested scans to review in team meeting as first step. I got surgery before that happened. D
I am very puzzled by that as his office assured me my styloid was removed to skull base and that there was none of it left to remove. Seems inconsistent. D
My right JV has opened up very significantly again and I can turn my head again after 2 years of being unable to do that without affecting ICP, oxygen & pulse spikes. D
So to answer C1 question earlier in this email chain mr T trimmed my left C1 in jan 22 & as he found styloid was also compressing JV he cut it on unplanned basis.
In May he trimmed right C1 at same time as my spinal fusion operation. I had hoped he would cut my right styloid too but he felt was no need to do that. Hence my later Ent surgery on styloid with Mr H.
Someone on site had concerns about C1 trim. It is only a small trim of end, whereas I think Mr Axon has in past cut a lot of Atlas. I agree cutting too much would be a risk to stability. I found small trim was ok. D
@jimjammer123 - Mr. Axon is not the ruler of his domain. He used to be willing to handle the ES cases that came to him, but as far as we understand, a group of perhaps administrators or his medical superiors tightened his rein & gave him the parameters he must now adhere to in order to accept a VES (or any ES) patient.
The question is WHY. Maybe they didn’t see expected outcomes? Or was it too time/resource intense surgery? Too risky? Too many complains? I guess we will never know
Personally I think it’s down to the UK NHS being in crisis! But it could be that there was a complicated case or two who didn’t get the results, as you say, we might never know!
Hi, so I believe Mr Axon did operate on some patients by removing the C1 tubicle entirely, (which I think may create instability issues). I think stenting JV may also have been problematic. Also I think Axon hospital does have new leadership who maybe think Neuro patients are crazy & just need pain meds- sound familiar? What I do not understand is why Mr Axon can’t be a bit more honest & caring to patients who take the trouble to visit him but who he cannot help. He told me my case would need committee approval (it met monthly). Eventually I gave up & moved on. D
Hi, was hoping to hear you had found some help in UK or elsewhere now after Mr Axon would not help you. My left styloid removal to skull base with Mr Hughes was last week. He was as competent & efficient as always. D
@PatientD Hi! Sorry I haven’t updated, things have been quite up and down health-wise for unrelated reasons. Still pursuing the styloidectomy side of things and I will update more fully when I have firm news.
I am very confused about how much Mr Hughes removes. I’m aware he removed all of yours, so I really don’t know what’s going on there, he was very clear that he wouldn’t remove all of mine, leaving about 1/3 attached to the skull. That seemed to be related to his surgical procedure rather than anything specific to my case. Strange
@IJVCompression - I’m sorry you’re getting mixed info about Mr Hughes’ approach to dealing w/ ES. So frustrating. Maybe it’s a case by case situation. Since you have IJV compression, I would expect him to do for you what he did for @PatientD. I assume you had a conversation with him abt your vascular compression & the need for it to be alleviated.
