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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To be worried about my daughter?

63 replies

ElectricalBanana · 17/11/2013 00:13

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

OP posts:
ICameOnTheJitney · 17/11/2013 03:55

Kate that was a hugely inappropriate post on a thread like this where the OP is ALREADY WORRIED! A word of advice....on threads where people IGNORE symptoms and are NOT worried, then share your sad tale....threads like this where the OP is desperate and can't get help...shut your mouth.

greeneyes1978 · 17/11/2013 06:02

My sil has a facial neuralgia, amongst many more health problems. It is hugely painful. She has at times paid for some of her consultations because the waiting times have been so huge. It is something she has wanted to do, and it is wrong to have to do it, but she needed some answers.

I am really hoping you get to the bottom of it very soon. You must be so worried about her :(

Slatecross · 17/11/2013 06:23

Kateandme that was a very silly post.
And fwiw tumours in the head and neck are usually painless, it's one of the reasons that they're often no ticked up until a relatively late stage as the patient doesn't think they're a big deal.
The OP's daughter isn't presenting with the usual symptoms of a tumour and much as I hate internet diagnoses, I'd be prepared to wager that this is an abscess/infection type issue - deeply unpleasant but not life threatening, and that's why she's being passed around the NHS.

goodasitgets · 17/11/2013 06:45

I don't know where you are in the NW but Preston has a neuro department that has a good reputation

Shonajoy · 17/11/2013 09:05

This happened to me when I was diagnosed with cancer. Before I started treatment I needed an MRI scan to determine spread. The NHS had a three week wait for a scan, so I ended up paying myself. It was about £400 but worth every penny. It certainly hurried things up.

It's shocking the state of the NHS people applaud it but sometimes for stuff that could be life threatening they're useless.

Lilacroses · 17/11/2013 09:05

Has she had blood tests OP? If so did they show some kind of infection?

Iamsparklyknickers · 17/11/2013 09:43

If she has the appointment letter from the hospital google the consultants name and tel number (stick the area code in with your search) and talk to his/her PA directly.

It's not right, but you can usually get better treatment if you appeal directly to clinician or department your referred to and make yourself known as a person and not another name on the waiting list. Prepared to be open to cancellations last minute and perhaps make a list of symptoms before the phone call so she can clearly state her case for been seen sooner.

If the PA is a dragon, ask to leave a message for the consultant so she can get some advice for managing her symptoms in the meantime. This sometimes means that the consultant will bump her up the list (perhaps double booking themselves which the admin staff won't be able to do without direct permission) if they're concerned enough.

Original poster
ElectricalBanana · 17/11/2013 10:00

Thank you all for your kind posts. I will ignore kateandme but I think their heart was in the right place.

She had bloods done and no infection was shown.

As you can see I was up in the wee hours and have only just woken up! Just heard her going out with her younger sister to local cafe for a slap up breakfast ( sister has sen and isn't coping seeing her big sister in pain) so I think she is feeling a bit better this morning. She certainly is brighter as time goes by whilst she is here. We are feeding her lots of soft stuff ( posh yogurts, milk shakes and dinners with mash potato) and I think we are cheering her up too - many many cuddles.

I will ask her if she has name of cons. She might not have it as she got app over phone. They should send her a letter though. I think ringing the secretary might be a good idea. But Tuesday is a gp app again. She is now seeing the senior partner so I hope he has a bit more clout.

She has been to the local walk in more times than she can shake a stick at.

OP posts:
Iamsparklyknickers · 17/11/2013 10:06

Glad to hear she's responding to your tlc Smile it's amazing how the simple things are the most needed when you're not 100%.

I forgot to say I'd be complaining about any Doctor who asked me what I expected them to do about it. Errr your job perhaps? Cheeky mofo. Angry

notapizzaeater · 17/11/2013 10:13

Poor thing, hubby had an abcess in his jaw this year, he said the pain was like nothing he'd felt before, took 4 lots of antibiotics to get it though. Hope she gets answers soon.

IamInvisible · 17/11/2013 10:18

Trigeminal nueralgia is a horrific condition to have. It is really, really painful. (I don't have it, I used to work in Maxillofacial surgery as a Dental Nurse). There is no magic cure unfortunately. My friend has it, she has recently had a nerve block in her face and has had quite good results from it.

Nerve pain is really, really under estimated. It is very, very difficult to treat. I have it in my legs. I take Gabapentin, it made me drowsy at first but if she perseveres with it she should find that reduces.

I hope she gets some answers soon and it is not a Glioma.

bumbleymummy · 17/11/2013 10:18

Can she ask to work from home tomorrow so that she can stay on with you?

Lilacroses · 17/11/2013 10:43

Keep us posted op, I had a year like this last year and only got through it thanks to my wonderful friends and family. When you are ill and in pain the last thing you want is to be arguing with the medical profession to get treatment. Often it is just about finding the right person but agree with one poster that it helps to be a "polite pain in the arse!" Best wishes and huge hugs to you all (don't care how unmumsnetty that is!).

Original poster
ElectricalBanana · 17/11/2013 16:05

DD2 is off home back to that there londons tonight after her proper chicken dinner. she seem better in herself today and is now snoozing on the sofa infront of the telly and a real fire.

i hope she gets some answers this week

OP posts:
Original poster
ElectricalBanana · 17/11/2013 20:25

Little update:her step dad ( my DH) has told her to book a private ct or MRI scan via gp and he will pay for it.

She is going to do so on Tuesday.

If she can only have the Xmas eve eve app I will drive down on the Sunday night and go with her. Then bring her home for Xmas.

OP posts:
Spikeytree · 17/11/2013 20:43

I was listening to a report on trigeminal neuralgia on Inside Health on radio four, the gist of it is in this article. www.bbc.co.uk/news/health-24932880

justmuddlingalongsomehow · 17/11/2013 20:50

I would recommend she gets herself to Kings Dental Hospital. Reasonably local to her and a great hospital throughout.

Haven't read whole thread as an trying settle poorly ds but hth! X

cocolepew · 17/11/2013 20:59

My friend has trigeminal neuralgia and the pain is horrific. I've never noticed her face swollen.
I hope your poor DD gets some answers soon.

Lilacroses · 17/11/2013 21:00

That's some good news then OP. So glad she has had a nice weekend of tlc and that there is a plan. Once again, keep us posted and best wishes.

tenementfunster · 17/11/2013 21:04

google cluster headaches. or wikipedia it. sounds very similar. i had this and it isworse than labour.
hope gets better soon

lucidlady · 17/11/2013 21:19

Lewisham is also my local hospital however the experts in this sort of thing are at King's. She should go to A&E there if it flares up again.

Jollyb · 17/11/2013 21:58

Not entirely sure why a glioma is being queried as this wouldn't cause facial swelling. It does sound more like an ENT problem.

Guy's and St Thomas' has a very good ENT /max fax department. I think she should press for a referral there.

IhaveNoOpinion · 17/11/2013 22:43

I have trigeminal neuralgia which has been confirmed by a neurologist and I will hopefully be having surgery next year to correct.

I have spent a Loooooooong and I mean long time Googling my condition and I can honestly say that I have I never seen swelling as a symptom of trigeminal neuralgia.

It is very rare that TN is caused by anything other than vein compression. That rare, that despite my age (35) glioma was not even considered and it took 25 weeks and 5 days to see my neurologist from date of referral. TN is usually seen in older people and if the sufferer is under 40 then an alternative reason for the cause of the neuralgia can be found. In my case, they investigated multiple sclerosis. But again, that does not cause swelling.

It is the mylin sheath being compromised that causes the pain. This happens in the brain and to all intents and purposes is an invisible illness. I really think that because of the swelling, it is something else.

I hope this helps and i truly sympathise. Hope she gets some answers soon.

Original poster
ElectricalBanana · 17/11/2013 22:47

She said she could smell her great grandmas bathroom all the time. This has come on in the past few days. I wondered if this was a sinus issue? I think the scan will give us an idea what is going on.

It is so bloody frustrating! I think the gp has been less than helpful. Grrrrrr bloody gp!!!

OP posts:
ukatlast · 18/11/2013 13:18

I also have never read of trigeminal neuralgia connected with swelling. Is the swelling severe or does it just feel swollen to her?
I know it is possible for muscle spasms to appear like swelling in the jaw area.
It could be dental in any event, one quick look by a dentist does not rule anything out.
Has she had full dental x-rays?
If it is spasms causing it, it would be for neurology to diagnose. It could be dystonia (which can settle down and be mild) as a possible diagnosis.

They can also do a battery of blood tests to rule out neuralogical conditions including inherited/late onset ones.

All of those possibilities are better than brain tumour and an MRI would help rule that out quickly.

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