I am at present completely rearranging the layout and furniture in our flat.Why? you may ask (or not lol)
Robin is driving me nuts!!!!Ever since his operation he is cold.Not the sort of cold that i might experience but a cold that produces pain.On the skin of his face in his jaw region and in his mouth on the side where the secodary tumour,the saliva gland,all the lymph glands,and the sterno mastoid muscle were removed.Some time ago we had to buy a scarf and when we go outside he has it wrapped round his whole face.Now if he is not constantly kept at oven temprature he is in pain.I can only describe it as like parasthesia and all the nerve ends seem super sensative.His jaw aches and he went to the dentist because he thought he had tooth ache.
Anyone got any ideas?.We are at St lukes tomorrow for his last simulator session before his treatment and i would like him to be feeling slightly better than he is.Eating is becoming an issue again and i am wondering if it could be that he is getting wound up about the radio therapy.Should i speak to the radiographers?
All suggestions welcome as the big problem here is that i am
1) From yorkshire and dont feel the cold
2)Of a certain age where heating and i dont get on.

Hi,
I had my op in June last year.Very hot so everyone tells me thru the summer. However,most of the time I was cold and had to have a blanket around me especilly at night. I didn't have the pain but now when I go out to play golf/tennis I have to be completelt muffled around the face as my scar is very sensitive to the cold. Also my teeth are! Generally I feel the cold so much now and I have my electric blanket on most of the night!
Anne

Well I live in Singapore - the temperature never goes down below 23 degrees - but during and after my radiation therapy, I feel the cold more. I used to swim every day, before being diagnosed - now I very rarely use the pool. I will dread moving back to Europe unless the threatened global warming kicks in sooner than expected

Pete

Have just found out that Rob has trigeminal neuralgia caused by nerve damage that occurred during surgery this explains everything and the hospital have started him on amitryptilline at night .The only thing is it takes about two weeks before the effects kick in,so in the mean time its a hot house ,a woolley scarf,warm drinks ,and a bucketload of pain killers.

cookey
What is "trigeminal neuralgia"?
I also felt cold after both surgery & R/T.
Even now I wear quite a few clothes, although I no longer need an extra blanket at night.

Just in front of your ear there is a huge three branched nerve called the Trigeminal Nerve .Any irritation or nerve pain is reffered to as neuralgia and can be triggered by all sorts of things ,cold being one of them.The bottom branch of the trigeminal nerve runs right through the area where Robin had his tumour and we were warned that it might get damaged.Post op all looked well but as the bruised nerves have come back to life the pain has started and in Robins case this is triggered by the cold.Just google Tigeminal Neuralgia and you can learn all about it and what triggers the attacks.

regards Liz

Hi there Cookey,

You could get him a ski mask, its like a balaclava, but with a large opening for the face. You should be able to find a soft fleece one in any sports shop.

Also you could try a cosy collar - it looks like a mini draft excluder (sausage shape), its filled with some kind of beans. You put it in to microwave to heat it up, then wrap it around your neck like a scarf or hold it to your face. You can find them in the chemist I think.

I also found if I wore a woolly hat most of the time (even in the house) it helped with the pain.

Redser.

Thanks Red
I suggested a balaclava and he laughed like a drain,but i am going to get him a couple of hooded sweatshirts because his scarf wont go up the side of his face far enough.As if the poor man hasn't enought to contend with

cookey
Thanks for the info regarding TN - I'm now a lot wiser. Following my neck disection I lost all sensation on that side of my face, wasn't happy about this but at least I avoided TN.
Hooded sweatshirts sound ideal - no gaps to let draughts in & they look fairly normal as well.

Glad to hear he can still have a good laugh! I am still wearing polo necks (turtle necks) most of the time and also a hat whenever I am out. The ski mask and the cosy collar are more for wearing inside when there is no one else around. The extra covering definitely helps.
Redser