post NPC radiation and chemo treatment

Hondo

lizajane said:

jaw problems due to paralysis of the face and to much radiation
Has anyone had problems with their jaw? I have gone through so much Radiation, my jaw has a mind of its own, which is so painful. When I open my mouth, move my tongue around, eat something small, my jaw pulls to one side, sometimes locks up. Sooo painful. What to do??

Hi lizajane

First Welcome to CSN

Its normal for someone to have Jaw problems after rad, I can’t open my jaw more then ½ inch and I get a lot of pain if I try to open it any wider then ½ inch. Also the nerve has been damaged on the left side which gives me numbness of the tongue and pain in the right side of the neck. I will say if your Jaw is pulling to one side more then the other call you ENT and have him look at it, it is possible that the jaw could be fractured in the joint don’t wait.

Take care and let us know how you are doing

Eversteve

lizajane said:

jaw problems due to paralysis of the face and to much radiation
Has anyone had problems with their jaw? I have gone through so much Radiation, my jaw has a mind of its own, which is so painful. When I open my mouth, move my tongue around, eat something small, my jaw pulls to one side, sometimes locks up. Sooo painful. What to do??

jaw problems due to paralysis of the face and to much radiation

I am so pleased I read this as I thought I was going mad. I am 4 years after treatment and this has only just started with me. It sort of locks as you say for a what seems like ages. Thank you.

Eversteve

janymac said:

tricks
I am from England. I am 8 years post NPC. I still have enormous problems with mucous deposits and personally find it very frustrating as am constantly sniffing, and if it gets too blocked, then my speech goes funny and can't breathe through my nose, so have to resort to mouth breathing which is so unconfortable as still have major problems with no saliva, and my throat end up stuck together when mouth breathe. If you have crusting deposits, then one doctor from the mediterranian that I saw, suggested steam inhalations of dried sage in boiling water through a face mask - the sort you get to enhale during a cold follloed by a nasal douche of salt water. It worked really well. Also recently after my major way of douching the nasal area was "nuffing in" a large mug full of salted water to try and force out crusted deposits - and always ended in coughing and choking, my specialist suggested using something called sterimar which has a great applicator. It is basically a salt spray which, if you apply it when lying down and try to "hold" it in the nasopharygel area, does a great job and can then expel it with a big sniff and cough.You do need to lie down and not sniff to soon though.I have bottles of it at home and work, in the car etc. and has been a life saver for me.

I also find the problem get worse about mid morning or early afternoon as it takes awhile for gravity to set in for the mucous to start travelling south from my sinuses and it usually happens at some embarrassing moment.

tricks

Thaks janymac and congrats on 8 years and the info. I am 4 myself.

Regards "I also find the problem get worse about mid morning or early afternoon as it takes awhile for gravity to set in for the mucous to start travelling south from my sinuses and it usually happens at some embarrassing moment. "....YES you are spot here, but because I still get associated headaches and fogging etc, I started trying to find out why some days are worst tha others. I am not saying I am right, but do me a favour, start monitoring the humidity and the weather in general.

I am based in the NetherLands, but I am English, so we are very low regards altitude so we often have quite high humdity which for me, causes me runny noses etc - you know the thing, damn nghtmare.

Now when we do have low humidity, the opposite happens and I clear my scar tissue is one good "spit" - sorry to be gross - and then I feel fit and vibrant.

I have got to the stage where I am serious contemplating moving house, just to cross off this issue.

I am also looking at demuhumidty machines - I'll keep you updated if it works, or if I am just clutching at straws.

I bloody well despise NPC and its long term side effects

Eversteve

GRAVEY said:

The doc is prescribing you
The doc is prescribing you that to make sure its not an infection of some sort. My doctor held off on giving me antibiotics and my mucus issues just went away, I would be careful of the antibiotics just because your immune system is already weakened from the treatments you are undergoing, it's up to you ultimately, but just know mine went away after about three weeks after my last radiation treatment. You could see if the doctor could put you on allegra, or claritin, or something like that to help dry up that mucus, I have dry mouth and no saliva, but I keep a water bottle on me at all times, and the allegra really helped dry my mucus up. It dries up everything else also, so I take it every other day rather than every day like the prescription calls for.
Good luck, and prayers be with you......
GRAVEY

The doc is prescribing you

Good comment Gravy. However regards the part "You could see if the doctor could put you on allegra, or claritin, or something like that to help dry up that mucus".......if you dont mind me saying, in my case, I disagree with this. Whilst the mucus is a pain in the butt, for many of us, the days when we do not have all the mucus are just as bad i different ways.

I have just come back to the site so have made a couple of comments today, one where I mentioned monitoring the humidity. Once we can all agree if it makes an impact or I am just clutching at straws, we can do something about it - air humidifiers or even dehumidifiers, keep windows closed etc etc.