To consider making a complaint to PALS?

[MyoOuch]

I have chronic pain which started in my face three years ago, primary care (my dentist) referred me on to secondary care at the hospital (oral surgery) for suspected TMD.

I have been asking for an MRI since the beginning as the condition, whatever it is, is getting worse with time. The jaw pain started to spread spread from the jaw, to the base of my skull, pain behind my eyes, my neck, shoulders and now my whole upper back area is in chronic pain.

My jaw also deviates to the side which it didn't to begin with.. so whatever is going on is definitely getting worse. Still no imagery taken.

For years I've been back and forth to the hospital for appointments with them, they've put me on two different medications that have done nothing. I see a new person every time I go who tends to do an examination and then kick the can down the road for the next one.

I had one consultant (I think that's what she was? Member of staff in oral surgery anyway) tell me there's nothing they can do for me and it's "just how you are" - I considered making a complaint then but they redeemed themselves when another lady assured me I was a candidate for botox.

So eventually I had botox (after a two year wait and me breaking down in tears during another appointment where it was looking like they'd do nothing) essentially still treating me blindly as I hadn't had so much as an X-ray.

I've had to plead for a referral to neurology after doing my own research and wanting to rule out occipital neuralgia among other things. That can was kicked down the road for months so I went to my own GP who was shocked at the lack of progress and sent off a referral himself.

That referral was subsequently rejected as the neurology department wanted the referral to come from secondary care, for the benefit of continuity.

Cue me having to plead with oral surgery, again, to please send the referral.

Finally after almost three years and endless pointless appointments where I've travelled across the city for nothing I've had a referral sent to neurology which I'm told could take 6-12 months. I've also, after breaking down in tears again had the most recent person I saw today agree to refer me for an MRI.. which could take another 6 months.

All of this has gotten to the point where I'm unable to care adequately for my children on some days. I receive alot of support from my OH and DM as when the pain is bad it's completely debilitating and I can't function.

I'm upset and stressed that if they'd have just taken a bloody X-ray or done an MRI at the beginning they could have treat whatever this is, or put me onto somebody who could, and I wouldn't be in the state I am now.

So WIBU to make a formal complaint? Do you think I'm being entitled to believe this baseline investigation into my condition should have been done along time ago thus could have saved me alot of pain and deterioration?

Voters saying unreasonable, please do elaborate. I'm happy to be told IBU if you explain why

Of course you’re not being unreasonable and i’m not sure how anyone could possibly say you were. I hope you get some answers soon. If it’s possible the consider paying for a private consultation to get the ball rolling.

I forgot to mention - my own dentist (new one) said I have a significant overbite and misalignment of my teeth due to having two missing teeth (no adult teeth came through after my baby ones fell out) and one remaining baby tooth that is significantly smaller than the rest of my teeth.

He said to point these things out to them as he felt that's what was causing the jaw issue, so I relayed all of that to the hospital who rubbished his opinion (despite the fact he used to work in maxillofacial thus knowing what he's talking about) and said my overbite isn't significant enough to cause any issues despite my top front teeth completely covering my lower teeth when I close my jaw - and I only have three areas where my teeth aren't connecting so that won't be the problem either.

I actually felt that he had solved the problem when he told me all of that as it made so much sense, but nope they said it isn't that.. yet can't tell me what it is 😔

Don't complain to pals. Find the independent ihca service in your area. They have more teeth.

Thank you, I'm considering taking out a loan and doing just that. I'm absolutely exhausted with it all.

No, you're not being unreasonable. I don't think people realise just how uncaring the NHS has become.

You should complain this is awful treatment. I work for the NHS and also my sister had surgery for exactly this and no longer has any pain
She lived in the states ar the time.

I'll look into this now thank you. I wanted to get some perspective as it's hard to look at it objectively when I'm in so much pain. I feel terribly let down but I know the NHS is in a crap state etc.

Yes definitely complain to PALS. And if you can afford to, go for a private neurologist consultation. I have had a similar problem in the past which was eventually diagnosed as trigeminal neuralgia. I was ready to lose my mind between the pain and the limbo of not knowing the cause. I saw a neurologist privately and he transferred me to his NHS list.
I really hope you get somewhere soon.

Have a look at SCI‘s. Has made a huge difference in 2 members of my family with TMD.

What is that please, SCI's?

Have you asked them why they don’t seem to think a scan will contribute to a diagnosis/treatment? Scans don’t always give the answers - perhaps there’s a reason they’ve been reluctant so far?

It’s called a sleep clench inhibitor.

You can get them fitted by dentists ( orthodontist in the cases in my family).

Cost a few hundred- but made a massive difference. One no longer needs one at all ( has had dental work to realign teeth) other still wears it- but aching jaw etc totally gone.

Definitely complain if you feel you haven’t been listened to but be aware that may not result in you being offered any imagining. I can’t comment obviously but complaining may not provide the result you want (it might, but it seems unlikely that many clinicians have refused investigations if they were indicated) You sound like you potentially have a facial pain/TMD disorder which can be so hard to treat. Trigeminal neuralgia is usually fairly straightforward to diagnose on history and although it can be hard to treat as well the medications do help enough to confirm diagnosis.

Your dentist telling you it’s because of missing teeth is not fair, that’s so unlikely to be the cause.

I hope things get resolved but I just don’t want you to have a false expectation of what any complaint or private consultation will give you. I think a review appointment with your maxfac consultant to really go into your symptoms and their reasoning would be the best the best thing.

I need an edit button. I meant “I can’t comment on your specific symptoms”

Looking into the SCI device now thank you!

As for the reason they haven't done any imagery up until now, they haven't given me one. It appears to be (atleast to me) because every time I go bar two occasions I see somebody new who just wants to wait a while, see how I get on with amitriptyline, see how I get on with baclofen, see how I get on after botox etc.

It has been in the pipeline for a long time but everybody I saw just failed to action it.

When I was first referred I was put under the care of a lady who knows plenty about TMD thus has all the TMD patients and she seemed really knowledgeable and encouraging. I only saw her twice before being passed from person to person afterwards, one person had the wrong notes for me and didn't even know why I was there and another thought nothing can be done for TMD as its "just how some people are"

I've had three appointments in the past 8 months, the first they said they'd send a referral but didn't, when I went for the second follow up the system was down so no referral or appointment for imagery, told to "see how I go" for another 4 months.

The last I heard about the lady I was under initially is that she is on maternity leave.

There is just so much kicking the can down the road and passing me between whoever happens to be there on the day of my appointment with no continuity following on from the previous appointment.

The lady I saw today commented that I've been under their department for a long time now, I kinda felt like a malingerer.

I’m so sorry that you’re in so much pain. It must be miserable.

I think if the MRI shows something treatable that’s been missed you’re well within your right to complain. But I think you need to prepare yourself for the possibility that it doesn’t show any explanation for your pain and therefore doesn’t move things further forwards. And if that’s the case I’m not so sure a complaint will add anything.

My bite is like this - see picture attached (not my own picture its one from Google but identical to my own teeth)

When this was highlighted by my new primary care dentist I looked into overbites and the link to TMD and felt so encouraged that I might finally have my answer.

Nobody had ever mentioned the overbite before or the possibility of my missing teeth contributing to it.

I was gutted today to be told that no its nothing to do with that as its not severe enough and also it's rare for a misaligned bite to cause TMD. That wasn't what I was seeing when I was reading up about it. I'm just so confused and exhausted.

Thank you, I think that's a well measured approach to take.

I've had private osteopathy (at an official school for osteopathy, so overseen by well qualified people who know their stuff) and they suspected TMD, comorbid occipital neuralgia and arthritic changes in my neck.

If I have/am developing arthritis in my neck that definitely needed early investigation as i know the inflammation can cause damage which it feels as though it has.

Random one to try, Alpha Lipoic Acid.

I have frequent nerve pain in my face from hyper mobility and read that it helps. Not sure if it’s mind over matter but the pain has been much less frequent and a lot more bearable since I’ve been taking it.

Thank you, I'll definitely give it a try. I'm willing to try anything at this point.

It’s not expensive. I think it’s about £7 for 100 tablets on Amazon and I take one a day.

There is a clinical study paper online I think about how it works.

If you have arthritis in your neck plus pain spreading far beyond the original TMJ site, think about seeing a physio.

I have a lot of problems mixed up together - migraine, bruxism, anxiety, and most recently tennis elbow. I was really surprised when the physio said the elbow issues originated from arthritis in my neck.

Having neck manipulation and maintaining exercises since hasn't got rid of the other problems but they all significantly improved, all the muscle tension has dissolved and I'm a much happier person.

Previously I would have sworn that migraine was just migraine but it turns out in your body, everything is connected.

Fuck me, how much does an MRI cost that they've been so desperate not to refer you for one, £15k or something?

I can't imagine what good reason there could be to not have had some imaging done by now. Dentists can do X-rays on the spot, so why is it so hard to get one in a hospital? They haven't even offered that, let alone an MRI.

A complaint would definitely be in order.

The NHS might be in less of a shit state of medics tried harder to refer to the correct place/person in the first instance!
Im so sorry for you OP.
Just a random thought - I’ve had as much of an overbite as you - had braces as an adult, it corrected it (and my high arched palate and crooked teeth at great cost and pain).
but .. total relapse on the overbite now. To be honest, it’s less uncomfortable than being in the brace (brace snapped) and having the “correct” bite.

long and short of it is, I don’t know if it is the overbite causing pain. I doubt it! But if it is it might be the jaw joints are misaligned (as you say yourself) and that’s not something to be overlooked.

it causes digestive problems too..

Contact PALS for sure