Bad experience at hospital today, do you think so too or was I being too sensitive?

[Sally61nm]

I'm under the care the oral surgery department of a large city hospital, the condition I have is acute TMD (chronic face and head pain basically)

I had an appointment there today for a review of my condition as my last appointment was cancelled in the middle of last year due to covid.

When I arrived the person who called me through wasn't the person I've been working with during my last two appointments, she wasn't welcoming nor approachable and actually had the wrong file to begin with. She thought I was somebody else who was there for something to do with their tongue.

I explained the history and she pulled up my file on the computer. She asked what was going on and I explained that despite physio and medication prescribed previously there the pain was the same and was so unbearable some days that it is impacting my ability to function properly, especially as I have small children I need to be on form for.

When it's at its worst it affects my (already poor) eyesight.

After a very rushed examination which she did only for the benefit of the student observing, she told me (and I quote) "there's nothing we can do, its a complicated joint and it's just how you are. You will have to learn to live with it"

Much to my embarrassment I started to cry at this point as i'd been waiting almost a year for this appointment, suffering daily, she just wasn't interested at all and wanted me to move along.

I asked to speak to the lady I usually see (the one who oversees the care of all the TMD patients) she reluctantly went upstairs to find her but as she was leaving told me that she wouldn't tell me anything different.

The dentist I've seen previously came downstairs and could see I was visibly upset, she was brilliant and long story short we have a plan moving forward. It turns out there's alot more they can do for me including botox and different medications to name two options.

I feel such a fool for crying as I'm usually very stoic, but I've been suffering for so long and saw this appointment today as something to hold out for as the original dentist (not the first woman I saw first today) is lovely and seemed determined to find a way to help me (and still is)

I'm not planning on making a complaint or anything like that but I was wondering what others think about the first dentist treatment towards me?

Please report your experience.

My dd (18) is experiencing similar symptoms and recently had her first appointment for it. That doctor was lovely, luckily. It would break dd to be told, wrongly, that this is it and she would have to put up with it indefinitely. She is unable to eat certain foods now, and the pain is difficult to cope with.

What a relief that your usual doctor was available. I hope that the revised plan helps you.

YANBU I had TMD which came and went for a few months during a really stressful period of my life when I was teeth grinding. It was utter hell and I can't imagine the pain of living with it. She sounds seriously unprofessional and uncaring and I'm sorry you had to deal with that!

Please write a letter describing exactly what happened, how it made you feel, and your concern that other patients who do not have the benefit of a prior contact with a more considerate and understanding professional might feel so desperate at the prospect of "learning to live with" debilitating and constant pain might decided that they cannot live with it, putting their lives at risk.

The first dentist needs help developing her empathy and people skills. She should NOT be training students to act in the same cold hearted and inconsiderate manner.

Not defending her manner but very little evidence for treating TMJD so no clear guidelines for treatment - so saying nothing to be done might mean ‘no proven treatments available’ whereas the other dentist is ‘try anything’. I know first hand how debilitating chronic pain can be but it’s not the same as denying an inhaler for an asthmatic in terms of clinical judgement

You don’t have to make a complaint to comment on how they could improve the care they provide.

I just don’t want you to think Botox / arthroscopy / TMJ surgery are all widely known about / available / evidence based - the complaint should focus on manner / exam I feel from my experience in the field. Lots of OMFS consultants do not set much store by treatment options for TMJD (which is upsetting and unfair but sadly true!)

Botox is not normally available for TMJ on the NHS, and is not proven to be any more effective than placebo, so I'm surprised you were offered botox on the NHS. We struggle to get funding for botox for people following cancer treatments, let alone TMJd patients. The majority of TMJ conditions are treatable with conservative measures and do not benefit from surgery unless there is a lock. So the first dentist was right, it is also unfair to promise treatments that potentially don't work. I'm surprised the TMJd specialist needs to research the effects of amitriptiline when this has been a longstanding treatment for TMJd

Who called you into the room? It sounds like the first person wasn't expecting to see you, did the nurse call in the wrong patient?

Potentially the first dentist misjudged the situation, if they are a dentist working in an oral surgery department they are maybe a trainee or certainly a junior member of staff and I imagine the specialist will probably have already spoken to them about where they went wrong. I'm not sure what benefit there is to complaining

If your symptoms are myofasical and they've already diagnosed a disc problem I don't see what benefit and MRI is going to have either

If you raise it through PALS it becomes part and parcel of the regular review of the department provision as well as that if the staff member.

It's not a complaint like you'd make elsewhere. It's supposed to be a useful thing for all concerned.

So please, do at least contact PALS and see what they think would be a good way to deal with it. It's what they do, they won't fob you off.

Yes our doctor told my husband he had to man up about a hiatus hernia turned out he had a stage 4 brain tumour on his brain stem. He’s been dead 3 years.

@DIshedUp said it better than me.

@DIshedUp

Botox is not normally available for TMJ on the NHS, and is not proven to be any more effective than placebo, so I'm surprised you were offered botox on the NHS. We struggle to get funding for botox for people following cancer treatments, let alone TMJd patients. The majority of TMJ conditions are treatable with conservative measures and do not benefit from surgery unless there is a lock. So the first dentist was right, it is also unfair to promise treatments that potentially don't work. I'm surprised the TMJd specialist needs to research the effects of amitriptiline when this has been a longstanding treatment for TMJd

Who called you into the room? It sounds like the first person wasn't expecting to see you, did the nurse call in the wrong patient?

Potentially the first dentist misjudged the situation, if they are a dentist working in an oral surgery department they are maybe a trainee or certainly a junior member of staff and I imagine the specialist will probably have already spoken to them about where they went wrong. I'm not sure what benefit there is to complaining

I have tried all conservative measures already.

I've had a mouth guard (?) custom made by my regular (not hospital) dentist which I wore every night to no avail.

I've had baclofen, naproxen and a ridiculous amount of ibuprofen to no avail.

I've had voltarol and every other anti-inflammatory gel I can find in the shops.

I've had physio.

I spent hundreds on a private osteopath.

I had a course of acupuncture at a local Chinese health shop.

I adapted my diet, cutting out almost everything that required alot of chewing.

I've practised meditation, mindfulness.

I spent a small fortune on a massaging device.

I've alternated between hot and cold packs.

I've tried not speaking at all some days, to see if I can alleviate the strain on my massater (sp?) muscles - which have been referred to my by osteopath as "like concrete" as she'd never seen somebody with TMD to the degree that I have.

It's very disappointing to hear that you struggle to obtain funding for cancer patients to have botox, but please don't conclude that I'm not deserving of it on the NHS because I 'only' have TMD. I live with chronic pain on a daily basis to the extent it impairs my ability to function and be a lively / active parent.

The first dentist was the one who called me into the room, she had my name right but was under the impression I was there for an issue with my tongue. No idea where that came from. It seems as though my regular hospital dentist was busy elsewhere so this one was delegated my case.

I'm surprised the TMJd specialist needs to research the effects of amitriptiline when this has been a longstanding treatment for TMJd

She needed to research the effects of amitriptyline used in pregnancy, not in general.

Me being pregnant wasn't a factor in the initial dentist being dismissive about treatment either, before that is suggested.

It was a blanket "there's nothing we can do for TMD, sometimes it's just how you are"

@Fcuk38

Yes our doctor told my husband he had to man up about a hiatus hernia turned out he had a stage 4 brain tumour on his brain stem. He’s been dead 3 years.

Christ that is appalling, I'm so sorry

I would complain actually, for all the people that the first woman would fob off due to her incompetence. I would not be after compensation, but to ensure that her managers are aware of her failings.

[quote NommyChompers]@DIshedUp said it better than me.[/quote]
Just because the NHS won't fund something, doesn't mean it is not a worthwhile treatment. There are so many protocols to jump through just to get basic treatment for straightforward conditions, for which you could get same or next day treatment in most other countries.
Even in the generously funded Blair years waiting lists for MRIs for back issues were 9 months long in the area we lived in so my DH paid privately.

I imagine the specialist will probably have already spoken to them about where they went wrong. I'm not sure what benefit there is to complaining

Because OP has no idea whether the specialist has spoken to them or not, and should err on the side of taking the action that makes certain that they will be spoken to. Whether they're trainees or qualified, they need to know how and where they went wrong.

@Fcuk38 that’s heartbreaking to read . I’m really sorry

Just because the NHS won't fund something, doesn't mean it is not a worthwhile treatment. There are so many protocols to jump through just to get basic treatment for straightforward conditions, for which you could get same or next day treatment in most other countries.
Even in the generously funded Blair years waiting lists for MRIs for back issues were 9 months long in the area we lived in so my DH paid privately

Absolutely.

Botox has been incredibly helpful and even life changing for alot of TMD sufferers, like posters mentioned on the first page.

I cannot go on like this for another year, I am losing the will to live.

She was dismissive. Please complain so she will learn from this and not keep doing it to other people.

TMJ is awful - I’ve suffered with it for years. I had much the same experience as you with one maxilo facial surgeon I saw - basically told me there was nothing they could do for it and washed their hands of me. I got a mouth guard from a private dentist which really helped but didn’t eliminate it. I’ve just started Botox treatment privately - it seems to be working really well so far so fingers crossed.

The pain is that bad tonight I've spent a sizable portion of the evening laying on my bed feeling as though I'm going to throw up. I can actually feel my cheeks constantly in spasm as I type now. My head feels like it could explode and I've got such a deep pain radiating from the base of my skull down my neck I can't look to the side without feeling like I'm going to be sick.

It hurts all day every day, but I get flare ups where it becomes so all encompassing (like now) when I can do nothing but lay there willing it to feel better the next day.

Usually flare ups like this happen just before, and during, my period.

It seems my current pregnancy is bringing it on worse as I've had the worst week of it I've had in months.

I'm so so sick of this

@DailyFailstinks

TMJ is awful - I’ve suffered with it for years. I had much the same experience as you with one maxilo facial surgeon I saw - basically told me there was nothing they could do for it and washed their hands of me. I got a mouth guard from a private dentist which really helped but didn’t eliminate it. I’ve just started Botox treatment privately - it seems to be working really well so far so fingers crossed.

I'm so pleased for you!

Can I ask, do you get pain at the base of your skull and down your neck? This is a primary symptom of mine and the part I find the most debilitating.

I thought it was occipital neuralgia but the specialist said that's a different type of pain, sharp in nature, and what I'm experiencing there is very commonly part of the TMD.

I'm positive that botox would help for the face pain, my massater (sp?) muscles are like concrete.

I’m concerned that she was tutoring a student.

Please report your experience to PALS. The person you saw did a bad job and was about to give you the wrong information and deny you treatment that could significantly improve your life. She needs some additional training and mentoring.

Just write a brief report of what happened to you and send it in. It might save other people like you from suffering in the future.

I would complain . What if she was the only dentist you saw as a patient . You would leave to suffer in unnecessary pain !! I’m glad you found your original dentist who has helped you . But complain so she doesn’t leave others without proper help