Yes it was Prof Smith I saw at Medserena. D
Will look at your other qus & respond soon. You can start private & try to move to nhs in parallel. But latter takes time. It has taken me almost 2 years & still not seen Mr Hughes on NHS, despite GP & then QS referral. So start early, donāt wait. Am now getting some NHS help at QS but still doing some private consults. You are right in thinking GPs wonāt have a clue. D
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To reply to your point about crepitus, I have this all the time. I always wanted to crack my neck by putting my right ear to my right shoulder to feel a crack around the left c1 area. The crepitus seems to go away in the shower or when I put heat on it. Itās worse in winter when I tend to hunch my shoulders up to keep warm, especially when Iām outside (although only since 2021, it never used to do this). I wear a scarf to try to stop myself from doing this now but it doesnāt really work. The clicking and popping at the base of my skull at the rear is getting worse, I now donāt have to move very much to make it happen, sometimes it happens when I roll over in bed. This is why I went down the instability route at first. I also get a grinding noise from the area of my hyoid and throat which I get when I move my neck. I donāt have constant pain but it comes and goes and some days are worse than others. I havenāt had a diagnosis of anything yet but after googling my symptoms this is a list of what Iām checking in order of importance (worst things first basically):
CCI/AAI - confirmed no
Eagle Syndrome - awaiting CT
āPosturingā (as my dentist calls it, when Iām concentrating or stressed I tend to thrust my tongue and jaw forward) or TMJ/clenching of sorts
Breathing pattern disorder
My eyes (I have a slight 4th nerve weakness in the right eye, this can lead to imbalances)
Some sort of lavator scapula/ trapezius or sternocleidomastoid issue
With regards to NHS doctors you need to really push them and no one will know what Eagle Syndrome is, my doctor googled it while I was there.
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@Skatkat What you describe is pretty much the same for me.
My direction is also that way, right ear to right shoulder, similarly cracking at the C1/C2 area on left side. Yes similarly when its cold outside i get this feeling in my shoulders, trapezius etc and down thoracic spine where i hunch up. Similarly iāve also got this āposturingā effect, i have had TMJ issues and right sided tinnitus for 5 y, causing me to tense, push my tongue against my teeth and generally have an uncomfortable feeling in my face/jaw. Breathing pattern has also been noted from physio that iām āgaspingā for air. Similarly levator scapulae, trap issues, SCM issues. I noticed last year, before these symptoms started that i got weird postural issues with my head jutting forwards causing my teeth to not align well and got some rough spots.
I think we probably went down the instability route because of some polarising figures online - i wont name them here for fear of being sued for defamation, but i think there are a few US based ādoctorsā that are not helping this situation.
I guess ultimately a vascular issues, causing weird heamodynamics, fascia problems, muscle tension probably would cause poor articulation of a joint surface hence the need to crack and hearing crepitus.
Glad to hear you dont have constant pain, but from my perspective the persistent headache is manageable, the vascular issues in my case feel a lot worse. The worst was my big flare up in march/april, POTS like symptoms, crazy hypertension, mega anxiety. Slowly things improved to this stable level where i can still work.
I agree getting NHS doctors to do anything is difficult, i realise they cant believe everything patients say, but sometimes there are cases where the patient is better informed than them. But for me the biggest issue this year wasnt getting doctors to believe me, it was getting my partner of 13 years to - she didnt believe me and thought it was all in my head and blamed it on the stress of starting a new job, so we arent together anymore which was difficult but hey ho!
Very similar to me, I donāt really talk to my family about this much anymore and my husband doesnāt know Iāve been going for scans or tests, everyone just thinks I have anxiety and wonāt entertain anything else. I had it really bad in 2021, massive anxiety, couldnāt sleep for weeks, stroke like symptoms, tension, head pressure, eye pain, etc. I went to A&E about 30 times convinced I was dying but they just kept saying anxiety. Eventually I managed to calm down by telling myself I hadnāt died from these symptoms yet & I managed to stop myself going to A&E, go back to work, manage the pain with painkillers and downloaded headspace to help with breathing and sleeping. Iāve gone back to trying to exercise with running and some online exercise classes but the tension seems to get worse in the evenings when I do these.
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Iām sorry to hear that, its bad enough having to deal with difficult health issues but then not being believed by the people who you need, its gut wrenching.
Despite knowing its not anxiety for me, Iām in a fortunate position with regards to finances, nothing huge but enough that I can pay for private therapy once every week or two which has massively helped me just rationalise this massive change in my life and try to accept that its going to be like this for a while. I think this has helped to the point where i dont take painkillers anymore just live with the moderate pain i have unless its a particularly bad day.
Great you have got back into exercise, iāve found that trapezius training with weights and scapular rows help me for a bit . Also great that you are also able to work, i find iām better on the days where i go into the office and move about a bit more, possibly due to distraction. A lot of this year has been relearning that I am capable of doing things, to the point where iām probably at 80-90% of my usual activity but just with some discomfort. My symptoms particularly brain fog seem to massively improve in the evening, like after 5 pm pretty much daily, so i hope you also manage to get some respite at some stage of the day!
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@LimeZest - Iām so sorry to learn that your symptoms have caused the end of a very long-term relationship. I have recently joked with my husband that weāre now in the āin sickness & in healthā part of our wedding vows (weāre both approaching 70). I donāt think he appreciated how bad my symptoms were prior to my ES surgeries, but he never accused me of being a hypochondriac or having anxiety issues for which Iām very thankful.
@Skatkat - I totally understand taking care of yourself medically w/o sharing details w/ your husband as Iāve resorted to that tactic in the past because I felt he didnāt understand my need for answers & leaving no stone unturned to get them. I did fess up eventually, and he didnāt seem to mind which was a relief.
Iām glad you two have been able to support each other here. I hope youāre both able to get definitive answers very soon so you can proceed with whatever process is necessary to help restore your lives to more normal.
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Thanks @Isaiah_40_31 and @Skatkat i appreciate your kind words. Ultimately its difficult to put other people in your shoes, so hard to describe especially when a lot of symptoms can mimic anxiety. But as a scientist I am extremely open to many ideas. I think many people love to talk about this ābrain-bodyā connection, how we can āthink ourselves illā. But very few people consider the ābody-brainā connection. It is a two way process, with the vagus nerve in particular being a major factor in the regulation of this connection. So i dont find it that surprising that vascular and sympathetic nervous system issues can result in anxiety which of course can arise from CCI, AAI, ES and more. I remember myself that during the big flare up, i had unrelenting anxiety, my body was pumping adrenaline to get blood to my brain hence the constant fight/flight mode.
So although there are good explanations - its still difficult to convince people, but i guess overtime I realised i was getting a lot worse by keeping myself in a situation where i was surrounded by someone who didnt believe me, so i left and starting trying to get on with life as best i can while I sort this out.
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Youāve hit the proverbial nail on the head @LimeZest - re: the vagus nerve & illness/pain connection to anxiety. Weāve long asserted here that anxiety & ES go hand in hand for the very reasons youāve brought up. Not only that but the vagus nerve is largely responsible for our anxiety levels so in general, when itās happy, so are we.
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Hi, I comment here on costs topic earlier in this thread. If going private it helps if have private medical insurance (usually via employer schemes) as then some (but not all costs) will be paid by insurance. If self pay then styloid removal on one side was cĀ£6.5k at Cleveland clinic. Was told Mr Axon is Ā£12k by another member but not sure on that.
Mr T fees Iād have to review again for C1 trim- but hospital overnight stay & theatre costs I did not know as insurance paid that. Nuffield Leeds or his Secretary could tell you total costs.
Hope some help. D
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Thanks D
I did get in touch with Mr Timothyās secretary. Did you do your CTV with them or at Queenās Square? Do you know if the one at London bridge ordered by Mr T was with head rotation?
Hi @PatientD @Skatkat @Jules @KoolDude @Isaiah_40_31
Just been in touch with Mr Timothyās office, they are looking to order a CTV, i had confirmation from his secretary this would be only in neutral not with rotation.
Would you recommend to check with Mr Hughes team to see if they would do CTV with rotation?
I think surely doing with head rotation is important but iām not sure!
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@LimeZest I am afraid Dr T. wonāt accept a CTV from another institution. He told me that he wonāt do surgery unless he has CTV done in his clinic. You can check with him though if he is willing to make exception for you.
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Thanks @KoolDude when you came over to the UK for this did you do CTV in Leeds or London Bridge? Either would be fine for me but interested to hear your experience
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I did CTV in Leeds Nuffield Health where Dr T. practices. He does not prefer CTVs done on other places but I do not know if he can make an exception for you.
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@KoolDude ok interesting, his secretary said they can book these at either Leeds or London Bridge. Ok thanks thatās really helpful I will likely proceed and have it done in Leeds. Hope you are doing well!
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Hi, I had my CTV & MRI at London Bridge with head rotation in CTV. This was at request of Mr Timothy. Leeds was not mentioned but maybe he uses Leeds for CTV as well now. Personally I felt CTV rotation was important. I told imaging team to do right rotation last as knew it would set off involuntary spasms. With hindsight should have asked for MRI before CTV so no risk of spasms during MRI. Up to you based on Mr T preferences, cost & your geographic convenience. D
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I have had CTV on NHS at QS but agree Mr T will want to use 2 imaging places he prefers. D
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Not had imaging with Mr Hughes. Iād let Mr T do scans I think. He was better than most at reviewing imaging & not just relying on report like most do. D
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Thanks @PatientD London would certainly be easier for me - I will double check with his secretary in case he has a preferred location, but if there isnt a preference will go for London Bridge.
Yeah they asked for MRI brain, cervical spine and CTV before having a consultation. Luckily iāve had MRI brain and C-spine (upright one at Medserena) so hopefully they will accept those.
OK thats really positive to know that Mr T looks at scans themselves, the reports iāve had are not exactly detailed especially NHS ones. I recently had a lower C-spine and upper T-spine X-ray on suspicion of thoracic outlet syndrome as my hands go pale white when i lift them up (Roos test) and the report was literally a few words.
Thank you so much for your continual help and advice.
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