Bit of a long shot I know, but wonder if anyone has experienced this..really need help!

[Littlemissmischief]

Hi,

So the story goes....

My Dad started getting a pain in his face and neck about 5 weeks ago, it got slowly worse and he know has pain all done his face and jaw and an aching in his tongue, so bad that he could hardly eat or talk for long. It all came to a head on Saturday when he got up and the pain had shifted to the other side of his face and then he went numb all the way down his left side and he was slurring his words so my mum phoned an ambulance. They think he had a mini stroke but he has recovered pretty much fully from that now and the only problem now is his face. He is taking oramorph at regular intervals as the pain is so bad and he hasnt eaten for days, all the docs are baffeled to what it is but they surely cant leave it as it is? He is due to go back to hospital next week for a biopsy to check the cancer hasnt returned as he had it in the throat about 5 years ago, but they dont think this is related.

Thankyou for reading, x

Hmmm it really does sound like a stroke to me. Im not medical though, but i hope you get the answers you are looking for. Good luck. x

My friend's father had similar symptoms and he was diagnosed with Guillan-barre's Syndrome - here

He is recovering well. HTH

There's something called Bell's Palsy which makes your face look as though you've had a mini-stroke. Sorry, probably totally irrelevant. You feel so helpless, I know, when something happens to your Mum or Dad. Hope he continues to get better.

Thanks so much everyone, I think they have ruled out Bells Palsy as it was the first thing they thought of. Thje weird thing is, he is fine from the mini stroke now and has full strength back it is just this face pain really. I just keep thinking they surely cant leave him because he is starving and has already lost over 3 stone, he has meal replacement drinks but they dont seem to be enough and it hurtts to drink too. I also think he cant be the only person to have ever had this so just need to find someone with a definate answer!

I will look into the Guillian-Barre thing tho nigglewiggle thanks again x

google trigeminal neuralgia

jasper got here before me.

Don't rule out dental problems.

Thanks ladies, atleast I have a few things to Google for him, I feel like I have to do something, i feel useless!x

Jasper I was just about to say trigemminal neuralgia as well - but surprised the Drs haven't thought of it, especially as he is obviously being seen by the neurology team

Id get the hospital staff to refer him to the hospital dietician due to his weightloss and inabililty to eat due to pain.
They may consider an Naso-gastrictube (NG) being placed into his nose to his stomach in which they can feed him via that just for the time being so that he is being fed. Possibly see if he needs intravenous fluids too? Im sure the doctors/nurses will have sorted fluids if he needs them though?

All the best

Thanks alot for your advice Juggling, he was on fluids last week in hospital but i think that was more to do with his blood pressure. It is strange because they dont seem that worried that he isnt eating but that might be because he is overweight so he doesnt look 'ill' or whatever but when he goes back in this week for his biopsy hopefully they will take more notice of him. I have googled all the things the ladies on here have suggested and a couple of them sound promising so he is going to ask them about it. I am going to get him to mention the dietician thing too though so thankyou x

Could be a cluster headache?
I had these some years ago and initially doc thought i had a stroke as one side of face just frozen(especially droopy eyelid and couldn't talk properly). Even had a sore throat down one side.
They are more common in men.
hth

Thanks for the advice Harebelle and dickiethepunchlinedo.

The oramorph does seem to do the trick but only for short periods, at the moment he is able to keep the pain at bay aslong as he doesnt eat which isnt much of a solution x

Hi again Harebelle, sorry I should of mentioned, he is on MST everyday anyway and has been for ages for his numerous other problems - bless him.

As regards to the laxative, you arfe so right, because he wasnt eating they didnt bother giving him anything!!! The result...he was so bad on the weekend he had to have a nurse out! Im so about it, as if he doesnt have enough on his plate.

He is going back into hospital tomight for his biopsy tomorrow and I have armed him with all the info I got of you guys so I will let you all know the outcome.

Thanks again x x

Trigeminal neuralgia is what I thought of, tbh. Used to work in neuro, and the nurse specialist said that some TN patients are suicidal because it can be so severe

Hey Lou, i looked TN up on the internet aswell as many other things suggested but TN seemed to fit the best, it says that eating, talking and making facial expressions can bring on the pain and that is what it is like for him, he cant even give anyone a kiss cos it is too painful!! The only thing that has not been mentioned in any of the symptom lists`is the sore tongue and it is the main reason why he cant eat and drink because all along the one side is so sore when hew moves it. As you used to work in Neuro can you tell me if you evefr saw anyone with TN that complained of this symptom?

Many thanks x

Read this - "Neuralgia of the third branch causes pain on the side of the tongue and lower lip.
"

He needs to ask for a referral to a Neurologist. Southampton has an excellent Centre, but they are up and down the country.

There are treatments, but it is a chronic condition. I hope you get lots of support.

Hi Ladies, just wanted to update you all that my dads biopsy went well and they found one lump which they are checking, but they are in agreement about the trigeminal neuralgia and are getting various people up to see him tomorrow to sort out pain relief and other drugs to help and also a dietician. Just want to thankyou all for your help and advice because without it I think we wouldnt of got any help or any answers from the hospital.

Thanks again

I was on a different thread where there was criticism about seeking medical advice on a forum such as this. The point was made that it provides a spectrum of experience which allows you to better equip yourself for a discussion with the medical team.

This thread demonstrates that perfectly. I'm glad your dad is getting somewhere and I hope he gets the help he needs.

Thanks nigglewiggle. I must say I agree in as much as I wouldnt take advice from a forum as gospel and would also consult my doc or whoever with regards to the answers I found, but I hope people read this thread and see how much of a help it has been to me and my whole family in getting much needed answers.

Thanks again everyone x