Thanks Jules. So today I got a NHS appointment with Mr Hughes for Feb 28. His registrar who I met yesterday said he was operating with Mr Hughes today & that they would discuss my case. So guess this new appointment is the outcome. If I get to see Mr Hughes in NHS on Feb 28 I will post confirmation of that.
In meantime I think NHS scan of right ear area, where main problems remain is to be booked. Either CT, mRI or both. cTV in Nov at Queen’s Sq was for vascular stuff, so they want to look at jaw bone etc with these new scans. I told them I really need in depth and careful diagnostic help to work out what is wrong in right ear area. QS report was sparse on data & very unhelpful.
On more positive note have been working with Chiro/photobiomodulation expert and we have been using dry needling to help release scm/other chronic muscle tension. Not seen dry needling discussions much here before so mention it as it really helped unlock me from jaw surgery muscle tension, and it is helping me again now. Involves a very fine needle(s) being put in tense muscle, muscle fights with needle for a while, and then muscle gives in and releases tension. It’s not a painless experience but for me a short painful tussle is worth long term gain of muscle tension release. Today we did behind right ear. Tension and pain is greatly eased but ear is bright red right now, before it was bleached white with pressure buildup. I wanted to mention this in case can help other members with severe muscle tension problems. It’s not easy to find good dry needling practitioners with strong anatomy knowledge. But they do exist. D
I hope it goes well for you @PatientD I saw him privately in the end because the NHS was going to take such a long time. I’ve been referred to Maxillofacial privately but I’m not sure who is best to see for that one. Hope your appointment goes well.
Thank you. My max fax was in London for jaw. Also London jaw guard experts. But I have had another recommendation lately that looked good. Hope you find expert you need. Getting the right person is key & never rush in to jaw surgery. Function is jaw ( not teeth based bias). Maybe review max fax consultants at Royal ENT & Eastman Dental hospital in London to review/decide who you might see? Get more than one opinion. This dental/journey can be very expensive so proceed with caution. D
What a headache for you & such a hassle to have to make another appt. & wait some more. You should get bumped to the front of the line after what you went through on the NHS!!
I’m also an advocate of dry needling but live in a state where chiropractors are not permitted to do dry needling. I’ve had it done in another state when visiting my daughter. Mine was in my traps & some of the scapular muscles. I was in huge pain for several hours afterward & questioned my sanity in allowing the doctor to do the procedure, HOWEVER, when I woke up the next morning, ALL my shoulder pain was completely gone as though it had never existed. Since that time, I sing the praises of dry needling.
Dry needling has helped some of our members, never tried it myself! It’s good the Mr Hughes’ registrar did talk to him & rearrange your appt, I hope you’re able to get some answers about your ear issues too…
Quick NHS Mr hughes update. Now have NHS UCLH appointment before end Feb. Maybe I will finally see Mr Hughes on NHS, who knows.
Also given NHS MRI slot at UCLH in March to look at ear area where remain symptomatic. Sadly it’s been booked for left ear(wrong side) so hope can sort this out in time. No contact numbers given to discuss this on NHS My Chart booking form.
In case do not see Mr Hughes in NHS this coming week, have booked private consult early March, so know can see him now 6 months post op. I can cancel this if NHS slot finally works out.
Last NHS slot I was kept waiting almost 2 hours past appointment start time & saw his Registrar, not Mr Hughes. So seeing him on nHS is theoretically possible but very difficult in practice. It’s odd feeling to be sitting in cancer clinic with cancer patients when you don’t have cancer.
Sharing so others know nHS will be slow & tricky but I am glad to be with his NHS team as we try to figure out what is wrong around right ear area. D
Thanks for the update @PatientD ; I hope that you can find out what the issue with your ear is caused by…hope it is the elusive Mr Hughes you see this week so you don’t have to keep paying privately!
You are an amazing self-advocate, @PatientD! You have worked long & hard to get the scans you need & to see the doctors who can help you! I, too, hope the NHS appt w/ Mr. Hughes is a go this time.
Looking forward to hearing good news to that end. I hope your MRI clearly shows what’s going on with your ear. I’m glad the other symptoms have resolved to some extent.
Good news. I saw Mr Hughes in NHS today. He was very helpful in sorting scan issues out & booked me in for follow up consult after scans in NHS. So I have postponed my private consult for now. So you can get his help on NHS but it is slower & is not easy. D
