To be worried about my daughter?

[ElectricalBanana]

I have put this here as I need advice really.
She is 26 and has been ill now for 6 weeks. She thought she had wisdom teeth problems so went to the dentist - not wisdom teeth.

Pain in jaw/ face got worse and face swelled up on one side. She went to gp woh put her on antibiots and who got her an appointment with ent as thought salivary gland blocked. Went to appointment and was admitted. Never clerked in by doc, saw one doc who just asked her to make faces. Nurse took swabs, has a uss on face. Decided infection so iv antibiots. Discharged home on antibiots. No better after another week. Worse. Saw gp again and told " what do you expect us to do?". Made another app for another gp. Gp thinks she has trigeminal neuralgia. So puts her on tegretol and makes app for neurologist. Says it will be about 2 weeks. Puts on top of referral ? Glioma. She has waited for four weeks, been back to gp on many occasions as pain is so bad she is screaming at times. Her face is swollen and she can hardly eat anything. Gp keeps re referring her. I advised her to go to pals at the hospital as this was too long to wait. She has been given 23rd December. 12 weeks after the referral. I don't think she will cope that long... She has come home for the weekend and I am horrified what I see. The meds themselves are making her dr.oopy... She is on gabapentin too. She is walking with a stick and can hardly say a sentence without creasing up in pain.

She lives in London and I am up here in northwest. She goes home tomorrow. Any one give us some advice? Her local hospital is lewisham.
Sorry for any spelling mistakes. I am doing this in the dark on my phone

She should go to casualty....near you at home in the NW. YANBU to be worried.

We don't have a neuro dept here. I am sure they will just say go back to gp/ keep your appointment. I know hospitals don't like to swap and change. This is a chronic condition not and acute one...

Is her face droopy?

A friend of mine had similar symptoms and it turned out to be an abcess. She went from doctor to doctor and ended up with a hole in her face(which healed after the problem was identified and treated). I would send her to a different dentist and mention the possibility of an abscess. Probably not the same thing but worth checking out!!

Her face is swollen. It doesn't look droopy. She looks lop sided

She says she has a permanent headache... Like a hat that's too tight. The pain in her face is like being slashed with a knife... Which is also hot. Her tongue is numb on one side too.

She should go to a different doctor and ask for a second opinion. Drs can make mistakes, they can get entrenched in a position and refuse to look at the evidence. A fresh pair of eyes might see what has been missed.

The doctor suspects glioma, and she has been waiting four weeks after the referral? I'm not anything medical, but that sounds seriously wrong to me. The pain and the symptoms are worrying, even if it is just some deep-seated infection that hasn't responded to the antibiotics. If it were my child I would go in to A&E and refuse to move until someone saw her.

Ok - has anyone looked at her ears? They should do so as soon as possible because its possible that that's where the problem is.

It's odd - the diagnosis they've given is, according to the NHS site, extremely rare in the UK and more likely to affect the middle aged and elderly. So you would think that they would be making quite a song and dance about treating your Dd.

I really feel for her - the pain can be intolerable. And this is acute so she needs help now.

If she went to the Emergency Room, wouldn't they admit her and keep her until they had a diagnosis and a course of treatment? That sounds like what she needs.

oh steff if only... - particularly on a Saturday night!

She has seen quite a few docs, she has had her ears looked at an had attended a&e a few times to be told she must see her gp.

She says she has to go home tomorrow as she had work on Monday. She is going into work twice a week and rest of it working from home. She is afraid she will get sacked and lose her flat. I have suggested she goes back to gp on Tuesday and tell him app in for Xmas. I know the gp can call the consultant and talk to him.... I have suggested she say this to the gp.
I can't understand why it is taking nearly 13 weeks to get an urgent app for what could be a fucking brain tumour !!! ( sorry for swearing). My husband went to gp with blood in his stools and was having biopsies and MRI within two weeks. He did have bowel cancer and was treated. She only got the appointment after ringing the pals people... God help her if she hadn't. How long would've she waited?

That's too bad. :(

Well, I've had several abscessed teeth in the past, and while an abscess can be serious, they're also usually treatable with antibiotics. If she's had antibiotics and is still suffering, I would think it's something else.

I guess she hasn't had a CT scan?

She hasn't had anything except an ultra sound scan on her face. And weeks of antibiotics and now anti convulsants which also supposedly dull nerve pain.

Can you go back up with her? It might help to have someone else there at the appt to raise questions and let them know that the family are on the case.

I don't even know how a civilised rich country can allow such neglect of an ill person! She is acute pain and with a constant headache and they are passing her to a gp?? It could be neuralgia of some kind, I'd say she needs anti-inflammatories, but really I'd insist on urgent MRI scan as it could be something worse.

It isn't a case of popping over there....I live a 5 hour drive away. I have another daughter with sen at home and I am a childminder, and I have seen how parents are not too impressed being let down at short notice.

If the system worked she should've been seen within two weeks. According to their website the urgent referral is two weeks for a query cancer diagnosis.

If it is sinister I will be so angry they will wish they haven't been born! I was in the NHS for 25 years as a qualified nurse and I have never been so bloody helpless. I can't help my baby.

so angry on your behalf . I think being an emergency (and your dd unsupported by anyone close in london) , the parents will understand your reasons for cancellations (they have kids too!). Can you take a train instead of driving? must be quicker. Poor thing can't even speak properly to the doctors.

Agree with beaglesaresweet.
Privately you could get an MRI tomorrow/Monday. When the NHS stubbornly cocks up, sometimes it is best to put your own life/health first for the sake of a few hundred quid.
The National Hospital for Neurology at Queen's Square London would be the best place to be treated NHS or private. Don't waste time with the amateurs in Lewisham if you don't have to. They will likely have to refer her again anyway if they have no neurology dept.
Best Wishes.
www.nhs.uk/Services/hospitals/Overview/DefaultView.aspx?id=1107
Private bit:www.qspcr.com/

I am sorry I don't really have any advice, but I hope it gets sorted out soon. You must feel so terrible, not being able to help.

What ukatlast said. Cost wise you're looking at £200 for a consultation (max) with a specialist ENT/neuro and then they can tell you what you're looking at re costs for further testing.

For Glioma she would have to be seen by oncology within 2 weeks or the referring Trust gets bollocked but I notice she was referred to neurology so maybe that's where it's fallen down. Or the neuro dept have said that her symptoms don't sound like anything sinister and have changed the referral. I have to be honest, having had a relative with a glioma, your dsughter's symptoms don't sound anything like what we saw, and our relative's experience was, we were led to believe, a textbook case.

I hope you get something sorted soon. I've always found being a polite persistent pain in the arse, is the only way to get things done.

My dad had something similar to this last year. It turned out to be stones in his salivary gland. These are like kidney stones and had to be removed by surgery. He too had terrible pain, a swollen face and thought it was a tooth problem to begin with. I am so sorry that you are both suffering.

I feel so so sorry for you both op. I have experience of being fobbed off for weeks on end like this with debilitating symptoms and I agree it is terrifying when no one is listening to you. Not sure if this would be any help but I eventually changed Dr. It transformed the situation. My new Dr said that the problem was everyone had been so busy ruling things out and moving me to different departments they hadn't bothered to tell me what I might have.

Sorry, posted too soon. I would definitely suggest seeing another Dr and making it clear that the pain is unbearable,it is totally unacceptable for her to be left in that state. I so hope she gets some advice and help very soon.

i dont want to be a bad news bringer but i know someone who had this and she had cancer in the jaw.but!!it most ceritanly doesnt have to be that.but if your worried and she is in pain.make them keep checking until shes pok.
take care.xx