I WAS DIAGNOSED WITH ORAL CANCER IN JULY.SHATTERED BUT WHAT OPTION BUT TO GET A MAJOR OP.I HAD 38 GLANDS REMOVED AS WELL AS JAW BONE,THIS WAS REPLACED MY HIP BONE.IM STRUGGLING TO WALK PROPERLY OR TALK PROPERLY BUT IT ALL TAKES TIME.IS ANYBODY THERE WHO HAS HAD A SIMILAR OP TO ME?

Good afternoon Chris,
sounds as though you and I had similar treatment.I had all fifty odd lymph nodes removed from my neck,two thirds of the jaw bone removed and replaced with bits and pieces from my left arm which in turn was repaired with a metal plate.After only three months you will still feel as though you have a pork chop in your mouth,this will continue to shrink and reach stability after about six months by which time you will not really notice it anymore.The speech difficulty varies from person to person but you will probably be showing some improvement by now (think about it and I'm sure you will agree)It is now nineteen months since I had my job done and my speech is fairly normal and has been for quite some time,I probably sound a little different but people understand me and that is the important thing.Chris it sounds as though we have a lot in common so if there is anything I can help you with please come back to me.
Keep Smiling
John

Hello John,
thanks for your reply and yes it is similar to me in that you had the jaw done also.Under my chin is still quite badly swollen with scar tissue,I had a dissection fron ear to ear,did you?and do you still have swelling under your chin? .My speech is not too bad but i,m getting new teeth which in turn will further help my talking.How did the op affect you if at all mentally John?do you live a normal life now or do you still get any hassle with this?
thanks again for your time

John and Chris. Hello I am Vicki, I too have had the Jaw replacement however I am having a horrible time with opening my mouth. I have tried everything to open it wide-r but it won't. I had radiation before the surgey none after. So my neck was like wood before the surgery, it is worse now. Thought maybe you could give me some ideas. I talk pretty good without a tongue, however it is because I cannot open my mouth very wide that is causing the problems. I cannot eat at all thru the mouth, I feel I could do this some as well if I could just get my mouth to open. I was also wondering if anyone has had any problems with the plate tearing thru the skin. Mine is doing this on the left side. I have a tear about a inch long. They are talking about removing the plate. I am not going for this at all. It is just one thing after another. It has been almost 2 years since I had the operation. I DO NOT EVER want to go thru that again...Help!! Always, Vicki Lynn

Helo Vicki

Nice to hear from you. The difficulty in opening the mouth is related to scarring/fibrosis of the jaw muscles as a consequence of the surgery and irradiation. Only thing you can do is to try to stretch them daily, using a Therabite , etc, after applying some warmth to them to help them relax. Sometimes surgery can be done to release the fibrous scar bands that restrict the opening.

Bone plates sometimes 'poke' through and then it is best to remove it as the opening to the bone is a break in the skin/mucosal barrier and can allow bacteria to go where they shouldn't. Only removal of the plate will allow the tissue to close up and heal. Meanwhils, you should keep the exposed plate area clean with chlorhexidine or whatever your doc recommends.

Take care.

Best wishes always
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Good morning Chris & Vicki,
Vicki- I think our cases are somewhat different,I was spared the trauma of radiation and tongue surgery so I didn't have as much to recover from as you did.Regarding mouth opening , I did have some initial problems, the worst was trying to remember where my mouth was.I aimed a spoon towards my mouth(or so I thought)and the food ended up on my shoulder,in my left ear,down my neck (on the outside) and quite by accident a little found its way to my mouth.Food plastered down my shirt front did little to satisfy my appetite so I set up a mirror so that I could see what I was doing and this made all the difference, after three or four weeks I had once more regained the normality of being a "nutritional marksman".I was shown a trick by one of the physio people which helped me, I was given a box of those wood spatulas which are used by doctors/ dentists to open the mouth and told to put a stack of them to hold my mouth open to a point where it was only just comfortable then slide an extra one into the stack,at first this was uncomfortable but that soon passed so the next stage was to add another extra and so on.But Vicki please consult the experts before you try this,I used the trick shortly after the surgery and you are a couple of years down line.
CHRIS--My incision started behind the right ear,down to the shoulder,then at a right angle towards the centre line of the throat curving upwards to the chin. I had considerable swelling and stiffness which took several months to ease off.I was told to get some "E45"from the pharmacy and massage this into the affected area for several minutes four time per day.It works.I got my wife to do this for me because I thought that I would tend to be too gentle. The physio also gave me a series of exercises to be carried out during the day which amounted to stretching the damaged area in several directions,it wasn't much fun but helped in the long run. Ask your advisors about exercises.
Regarding the mental position,it would have been very easy to feel sorry for myself but I decided at the outset that I was not going to allow myself to do that.The feeling sorry option is a lot easier but the alternative has more positive long term results.
Now what is normal? I'm sure you know that things will never be exactly the same as they were before that little lump appeared in your mouth.The human frame is very adaptable,think of the changes you have had to adapt to;from pre school days to school days to work,you handled those ok and once you accept your "new normality" things will be normal once more.
I am not sure what you mean by "do I still get hassle"? If you enlarge on this I will try to give you an answer--- this is if you can put up with my rambling on!
Keep Smiling
John

GOOD MORNING JOHN,
THANKS AGAIN FOR YOUR ADVICE.BY HASSLE I MEANT ADDITIONAL PROBLEMS AFTER YOUR OP BUT YOU SEEM TO HAVE ANSWERED THAT BY SOUNDING LIKE A VERY POSATIVE PERSON.I AGREE SELF PITY IS AN EASY OPTION AND I,M TRYING NOT EVEN GOING THERE,SO WITH HELP FROM MY WIFE ANNE WHO HAS BEEN AN AMAZING TOWER OF STRENGTH WE WILL GO ON WITH A MORE POSATIVE FRAME OF MIND.FROM TIME TO TIME I WILL THINK OF OTHER QUESTIONS AND ADVICE FROM YOUR SELF IF YOU DON,T MIND BUT MY STIFF NECK AND SWELLING IS MY MAIN CONCERN AT THE MOMENT
CHEERS CHRIS

HELLO VICKI
I,M VERY NEW TO THIS SO THATS WHY I,VE BEEN TALKING TO JOHN.REGULAR EXERCISE FOR HEAD NECK AND MOUTH IS ADVISABLE AT A REGULAR RATE.I HAVE AN ASSORTMENT OF EXERCISES THAT I RECEIVED OF BOTH SPEECH AND PHYSIO THERAPISTS AND THIS IS HELPING ME TO OPEN MY MOUTH A LITTLE WIDER NOW.ITS BEEN 8 WEEKS SINCE MY OP BUT I CAN FEEL THE DIFFERENCE WITH THESE EXERCISES.DOES YOUR SHOULDER HURT ?MINE IS STILL VERY SORE BUT AGAIN I TRY TO EXERCISE.MY REPLACMENT BONE IN MY MOUTH HAS NOT FULLY COVERED BY SKIN AND THIS DOES CONCERN ME A LITTLE BUT ITS OT SORE JUST UNCOMFARTABLE,HOPEFULLY THROUGH TIME IT WILL HEAL ITSELF.I KNOW ITS 2 YEARS SINCE YOUR OP BUT KEEP EXERCISING
TAKE CARE CHRIS

This message has been edited. Last edited by: Dr Vinod K Joshi,

Good afternoon Chris,
your wife sounds like my wife (Pat)a tower of strength in a time of crisis, we are lucky to have wives like these two.You are welcome to ask any questions you wish, please feel free.
In your posting of 12.13 today to Anne (??)you mention a sore shoulder, the surgeon has an impossible task to make the necessary incision in the neck without disturbing a few nerves and this results in the shoulder pain. Exercise usually relieves the discomfort but it takes time, try to be patient.I still have a twinge from time to time but nothing more than a reminder of what it was like eighteen months ago.
What part of Glasgow do you live in, I worked in Scotland for a total of ten years(2 in Aberdeen and 8 in Dundee)We have very fond memories of that time.Give my regards to Anne.
Keep Smiling
John

Hello John,
Yes my earlier post was for Vicky,I,m very new to all this .Yes I do exercise on a daily basis,i think i just like a wee moan now and again.I live in Baillieston which is the East end of the city,actually its about 5miles outside Glasgow,2 miles from Celtic park where i spend a lot of my time.I,m off my work just now obviously recovering from this op so I should be able to operate this pc pretty soon.
talk you you later john
all the best Chris

Hello Chris

I have amended your post to read " Hello Vicki".

Best wishes
Vinod

Hello Chris, Put me on your list!!! I too have had similar surgery to you TWICE! In March last year I had two-thirds of my jawbone replaced with bone from my leg / over half my tongue replaced with soft tissue from my forearm and a radical neck dissection. Post op I also had problems with my shoulder, but my physio soon sorted me out. My speech therapist also taught me to speak (as best I could) and swallow. I am still on a very "mushy" diet and hate eating in front of people. The cancer returned and in July of this year I had a repeat operation, this time taking bone from my other leg to replace the rest of my jawbone. So I was back to re-learning to speak and swallow and this time having problems with my leg - 4 months on it's now much better. I didn't need anything from my tongue. This last op has left me in more pain than before, I am seeing a pain doctor for this and taking umpteen tablets plus Oromorph. It does get me down at times, usually at night when I'm tired but I thank God when I wake up to another day!

I agree with Vicki about the fluid - I try to sleep on my back with lots of pillows and if I do end up on my side I know about it next morning with that side swollen. It does go away after a quick massage in the shower!

I was spared having radiotherapy so don't have as much scar tissue and radio burns - but the scar tissue I do have is bad enough - I can't imagine how people cope with those after-effects on top of everything else.

Life will never be the same as before but it's amazing how we adapt and get on with what has been thrown at us. Do we have a choice?!! Cheers! Brenda x

Morning Brenda,
nice to hear from you and thanks for any advice.You certainly havn,t had an easy ride and to have this bloody op twice,you must be a very strong person to cope with that.
i don,t require any other therapy(thank god)and just keep concentrating on trying to get better.
I hope your pain subsides as that must be awful to suffer all that after what you have been through,keep strong as you no doubt are.
Do you have support from family and friends? as I think that is really important.
I,ll keep in touch as all correspondance with one another can only help
cheers Chris

Thank you Chris and John, I did those wooden tongue depressers too a while back. Yet the mouth just started closing and closing. I used to get 10 in and I was so happy about that. Now I can only get three. Yes, three. It hurts so bad to try to open it that the pain isn't worth it anymore. I mean PAIN!! I can hear it too trying to open up. It is a grinding noise. The sad part is that it feels like my mouth is wide open, LOL, but when I look into the mirror--it isn't open much at all. I used to could see inside my mouth, now I can't. My Doctor is talking about taking the plate out which I am just so upset about. I have been thru too much for that, but I have no other alternative at this point. I just thought I was disfigured before---WOW--- I am really going to be now. I just so upset by this MAJOR set back. My Doctor says that the plate almost always tears thru the skin. It is just that most of the patients don't live long enough to have to go thru this. At least he is honest with me. I wish he would have told me this in the beginning tho. There is so much that they do not tell us, I know why, but is it fair? I just don't know how much more my little body can take. That is the honest to God truth. It has been thru so much and I just don't have the fight in me that I once had. I am not giving up. I am not giving in. I am just realizing the truth. The facts. I am not going to win this fight every time. Damn it!! Vicki Lynn

Hi Vicky
I am really sorry you are suffering and easy for me to say but please never give up.
I say prayers for all people like us,hope you don,t think I,m a crazy bible basher but im catholic and I think it might help and I,ll say an extra special one for you.
I totally sympathise with your plight,not that I,m going through as anything as painful as you are but lots of problems we have to conquer
What pain kilers do you take?hopefully as strong as possible to help your pain!
you take care
Chris