To want to scream and punch a doctor on the sodding nose

[DrewsWife]

My teenager has juvenile rheumatoid arthritis. She has 2 variants. Both linked. One called Enthesitis Related Arthritis and the other Psoriatic. She has damage to all her joints. But in particular both jaw joints. Known as TMJs.

When she was 12 we were told that she required a jaw replacement, widening and lengthening. Roll on 16 and he tells her... 30... She has a 22mm opening, can only eat soft food. Looks different. Facially. As it stopped growing when she was 10. And now he tells me. There is no point replacing it. It won't stop her jaw hurting. And he might sever a nerve in her face and there is no take backs in this op.

Basically. You are nearly 18 and you just need to live ole this. There is nothing we can do now to help. No more steroid injections and the arthrocentesis (joint washout and lubricant replacement) no longer works for you.

I am utterly devastated. And I can't stop crying. It took me all my strength not to break his fucking nose and tell him to live with that.

Am I being unreasonable. To him I am a pushy mum. To me... He's a dick

Oh dear. No wonder you are upset.

Can you get a second opinion? Even pay to get an opinion privately?

How awful. :( I'd try to get another opinion. Surely there's something that could be done, some sort of corrective surgery.

Oh Drewswife sounds horrendous agree with other posters second opinion . Can't believe in this day where they are virtually reconstructing faces there is nothing available. . As for pushy parent all you are demanding for your daughter is what all us take for granted to be pain free and to be able to eat a full diet!

We are attending her rheumatology tomorrow for her drip mediation. And I am going to pin down her rheumatologist and seek her help. I am fighting the urge at the moment to phone max fax and leave a voice mail asking that they remove her from their list. I am harbouring some prettying angry feelings.

He said there is no reason she should lose weight. It's not like the jaw doesn't function. Well yeah great she can eat soft or liquid only. Faaaab.

Was this the rheumatologist or an orthopaedic surgeon that said this?
How devastating - I'd definitely get a second opinion.
Your poor daughter and poor you.
I hope she gets her surgery

Sorry - cross posted.

He was right that there is no take backs with that op, and nerve damge is a side effect which he does have to warn you about.

It doesn't mean you can't have a second opinion but it too may not be what you want to hear.

My advice is too speak with your rheumatologist ask his/her advice, request a second opinion. The rheum may be able to recommend a max fax surgeon with a spec interest in rheum.

Don't take her off max fac list, it won't help.

What doctor was this? Has she seen a max fax surgeon?

I was in a rush this morning but I wanted to say that I really empathise. I have rheumatoid arthritis and my jaw is also in a very bad state, although not as bad as your poor DD. I see a fab maxillofacial surgeon who says that an arthrocentesis is never a long term option.

It sounds like her arthritis either wasn't well controlled or is very aggressive, my heart goes out to you and her. Is it controlled now? I know it won't reverse the damage but may prevent more damage.