Hiya,
My pseudonyn is faithlessleep,but any private messages i respond to i will use my real name,,i was diagnosed with spindle cell carcinoma in my neck in late sept 2007,the lymph gland was removed on dec 18th 2007,then this was followed up with 9 weeks rt.
The rt left me with no saliva glands wotsoever,,a damaged muscle on the left hand side of my tongue and restricted left arm movement,i can only lift my arm to the height of a nazi salute(sorry but its the only way to describe it)
Upto 12 mths ago i was ok until i got a ulcer on my gum,,i thort nothing of it until it got worse,,by then it was too late,,my consultant told me i had to have a op to repair the tissue,,he said the infection had exposed my jaw bone,,,and if not treated it would eat it away like rust on metal,i had a minor op 7 mths ago and all was well for a short while but it never really healed,about 3 months ago it came back with vengence,,the infection got that bad it weakened the jaw bone that much my jaw broke!
The bone just collapsed,,i was discharged from hosp on feb 19 2010 after a 2 week stay in hosp where i had a bone removed from my leg to reconstruct my lower jaw..all this has left me with a scar from my knee to my ankle,,a scar from from my ear that goes under my jaw and up my chin,,,and a hole thats healing in my throat from a tracha,,,god them things are horrid!!!
Good news tho,,,its taken well,,im on the mend,,just waiting for swelling to subside now.thanks for reading my story,,,by the way the cancer its self did not cause this,,,the treatment of rt did if you were wondering.

Hello and welcome.
Wow! What a trip you've been on. So pleased to hear you are on the mend. Gotta love that r/t. We used to say that my husband wasn't sick until he was being cured of his cancer with r/t!!!
Good luck with ongoing recovery.
Cheers from Down Under
Deborah

Hi and welcome. All my problems stem from the RT too but they aren't as severe as yours. Glad you're on the mend and hope things go well for you. Hagg.

hi there
welcome to the site,sorry to hear about your problem with the jaw it sounds quite nasty but i have heard of this before by a man on television who also had bone taken from his leg and put into his jaw.although rt is great in healing to get rid of the cancer it does cause us all the same problems like lack of saliva impaired taste buds and although my treatment finished in 2007 i still can only open my mouth a little because of pain in the jaw plus i have awful tooth decay and have lost 7 teeth in the last 18 months but hey i'm still here telling the tell.i do think the doctors should be much more open with what affects us after rt and it happens slowly for a long period.but having said that i would still have opted for having rt.i am getting used to the constant dry mouth and i now know which food i can enjoy.i wish you could have found us earlier because everyone on here is so supportive and we are one big family so if you have any questions we can help with then just fire away.take care love shirl xxx

Hi and Welcome,

Sorry to hear of the problem you have encountered. You took me back when I read your post about the scar on your neck and especially the tracha hole, that was the worse part. I don't know about your tracha but mine had to be stiched to my neck so all round the scare where the tracha was I also have little white pimple like scars where the stitches were.

I have only recently learnt about the long term affects of rt and am quite worried at the mo cos I keep getting a lot of pain in the jaw bone. I have another check up with my consultant in 2 weeks time. Last time I went he said if the pain was continuing he would x=ray me so I hope he will do this just to put my mind at rest.

I hope your recovery continues well.

hi and welcome, you really have been through the wars. but its good to know your getting better .best wishes jimmy.

quote:

Originally posted by Sue B:
Hi and Welcome,

Sorry to hear of the problem you have encountered. You took me back when I read your post about the scar on your neck and especially the tracha hole, that was the worse part. I don't know about your tracha but mine had to be stiched to my neck so all round the scare where the tracha was I also have little white pimple like scars where the stitches were.

I have only recently learnt about the long term affects of rt and am quite worried at the mo cos I keep getting a lot of pain in the jaw bone. I have another check up with my consultant in 2 weeks time. Last time I went he said if the pain was continuing he would x=ray me so I hope he will do this just to put my mind at rest.

I hope your recovery continues well.

Hiya Sue
I did,nt get pain in the jaw has such,,mine started off as a gum ulcer that would,nt heal,,this went on for about 4 wks,then i had a appoint with my consultant,,you know just a check up type thing,i mentioned the gum to him and he took a look,told me he could see my jaw bone thru a lil hole in the gum tissue,that was 8 mths ago,so he done a small op where he cut out the infection then using exsisting tissue put a couple of sutures in it,,trouble was he just would,nt heal,,then like i said this happened,,my jaw broke,the bone was crumbling away,and where it broke it put pressure on nerves that run thru the bone,,,the pain was horrific,,and there was nothing they could do to help while i waited to be admited into the hosp.