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Struggling...jaw widening surgery proposed

B brambleMember
First of all, I can't quite believe that John Spencer is no longer around...he was such a source of encouragement and support when I first joined this forum in late 2011.....I feel awful that I haven't even checked in for probably more than a year...although I have been thinking about the forum and MCF and have got my quilt group making a quilt which we intend to raffle....I gave them details of MCF MacMillan and our local hospice and whilst I said that I wanted them to choose which charity should benefit, I did confirm that the support I'd received on the site had helped me through some really hard times, so...watch this space...hopefully I'll be able to confirm a donation in the next couple of months...if I can work out how, I'll also put on a pic of the quilt. It's only half done at the moment..47 blocks out of 80, but it should be lovely when it's finished.
Anyway, now to the reason for my return to the forum....
I'm really struggling with the various limitations that my illness and the treatment have left me with....physical, emotional and financial.
Although I had my peg removed, I still can't really eat much. Certainly not a healthy diet...no big lumps, no bread, potatoes, pasta, rice, meat, fruit...except strawberries....nothing remotely seasoned. Although I can eat some veg, I can't taste them...can only really taste sweet things...so I generally eat porridge or trifle type puddings with extra cream to aid swallowing. As a consequence my cholesterol has soared and so has my weight...which is almost funny given that a year ago I was severely underweight and undernourished.
I have got used to this up satisfying diet, but the problem is that my jaw is getting more and more stiff and tight, reducing the amount I can open my mouth. I do use a therabite regularly, but it isn't enabling a wider stretch, just slowing the ankylosis (seizing up) of the jaw.
Has anyone had to have surgery to free up the jaw...I'm told the jaw joint itself is not the problem...the issue is the scarring caused by the radiotherapy. Although the idea is to remove the scar tissue and replace with undamaged tissue via live flap....the downside is further facial scarring (2 or 3 inches) in the nasolabial fold....no guarantee that it will work, a possibility that it could get worse and a strong possibility of increased pain (although I reduced my morphine needs, I have significant neuropathic pain as well as ongoing general pain in neck, around ears and jaw)
I am really really fed up. It's been almost three years since I finished treatment, but I still have little energy, I catch every bug going and deteriorate fast, the problems with eating have isolated me socially and even within the family, I'm now facing further invasive surgery, im broke...I dread the future. What's the point in surviving when there's so little enjoyment to be had left in life....I don't want to scare anyone and I don't want to seem as though I'm whining....I've just had enough...
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P petronelMember
Dear Bramble,

I can appreciate exactly what you are saying regarding the jaw stiffness. I am just over two years out of treatment - treatment which I coped with pretty well, but have been suffering from ever since.

I am really doing my best to exercise my way out of the jaw stiffness and neck stiffness. I had to have a general anaesthetic last summer and they managed to chip a front tooth because they obviously couldn't open my mouth any further. I also had trigeminal neuralgia which was screamingly agonising. I still have the neuralgia but at least I don't have the searing shooting pains at the moment. My doctor has got me fairly full of painkillers and nerve blockers, but there is only so much that can be blocked. Eating, as you say, is a problem. Everything I eat has to be casseroled to death. Certain types of meat can be managed. Lamb shanks, beef - especially ox tail and ox cheek are manageable. Chicken is totally inedible and turkey is not much better and pork is difficult. Some fish is OK - large flaked fish like cod and haddock are good. Can't do fruit at all. It all stings/hurts too much. The most painful thing is honey. Porage is good with sunflower and pumpkin seeds and hazelnuts (yes, I can cope with those). Can do Demerara sugar with that lot, but no jam or honey. Veg are OK up to a point. I can do casseroled celery, swede, turnip, carrot. Couldn't do cauliflower at one stage but can now, though it needs to be well cooked as does broccoli and sprouts. Cabbage not easy, Can do asparagus. Can't do potato in any form - not even creamed. Wrong texture. Can do spaghetti and linguine, but that is all in the way of pasta. Can do small sponge puddings with masses of custard, Crème brulée is good and I eat o a lot of ice cream - it numbs the throat and tongue! Can't do chocolate - there is something in in that really sets things off. I can do dunked cake: ginger is OK, coffee and lemon - certainly not fruit cake. Biscuits have to be dunked - but not all biscuits dunk well. So I am really no fun to take to the pub as I don't/can't drink and there is nothing on the menu I can eat. When I organise a group dinner in a pub they either do something special for me (which I never actually get round to eating as I am concentrating on trying not to choke) so I have decided that next time I will eat before even leaving home and then wait till the ice cream stage of the meal!

I have lost 2½ stone since the end of treatment in September 2012 and most of that was last summer when I had pneumonia, pleurisy, empyaema and collapsed lung. So far - touch wood - I haven't put it back on again and I am walking about 4 miles a day - in two sessions. Lung is wonderfully clear and back to proper size.

Personally I wouldn't be keen on the invasive surgery - never know where that might go....

Stay strong - you will overcome this.

Life's a bitch - then it has puppies.
B brambleMember
Thanks for replying...sounds like we have similar problems with food...people don't understand when I say that food stings/burns, even when it isn't spicy, but it does....as for alcohol...well...but a distant memory. Funnily enough I can do honey...started with manuka honey during radiotherapy when it was the only and I mean only thing I could tolerate, what with thrush, ulcers etc etc. chocolate also a no go...just gets stuck on the roof of my mouth.....I'm just so worried that if I don't have the surgery I'll either have to have everything through a straw or have another peg fitted....and that was awful because I didn't tolerate the feeds well, had constant diarrhoea and weighed nothing.....also, if my mouth gets any tighter, I wont be able to keep it clean and my teeth will rot etc....I had surgery to sort out my donor site and neck scar last year and couldn't be intubated even with a child's mouthpiece....they had to do it through my nose....
Do you mind my asking how old you are....I read a few of your posts and noticed you cooked Christmas dinner....I assume you have family....kids....
I have 2 adult (just about) kids, no partner and unlikely to get one at this rate!
Feeling very alone as I don't like to worry the girls...they need to be getting on with their own lives now, not worrying about me....
V valeriejMember
Hello Bramble,I'm so sorry that you are feeling very low at the moment.i had my OP 16yrs ago and although I still and always will have eating problems some things have got a lot better in time,opening my mouth has improved and my neck movements are better than before.i used to have pain in my jaw but not now.these things took a long time to get to how I am today but they have improved.I was a single mom when I had the OP and 44 yrs old,I thought no one would want me anymore with my disfigured face and all the other probs but then I met someone who looked past my scars,etc and we have been married 2yrs in March.hang on in there and hopefully things will improve in time .takecare.
P petronelMember
Good for you Valerie and it is good to know that there is the possibility for improvement, even if it takes longer than one might have hoped, and wonderful that you now have a husband to share life and all the other problems with - more power to you both.

Bramble, I hope you find this encouraging as well. It is always very difficult to be able to look beyond the current set of problems. For example - and nothing to do with it - but the right side of my ribs have been sorer for the last few days than they have been since the chest drains were installed in June/July. Maybe things are just beginning to wake up or it is the cold - who knows, but I'll get through it.

Chins up!

Life's a bitch - then it has puppies.
B brambleMember
Thank you both for your support and encouragement. I do know that improvements are often so incremental and slow that one has to look back over a year or so to be able really to judge whether progress has been made, but this very slow progress does get me down and my concern now is that my jaw is definitely tightening up even with the therabite....I had a lot of improvement earlier on but there has been regression in that area. It's reassuring to hear that the jaw pain does improve even after 3 years have past. People just don't understand how different recovery from head and neck cancer is, do they.....it can't be measured in weeks or months.....it's also reassuring to hear that you, Valerie, met someone new after your treatment. I'm 51 now and can't imagine how to go about "dating" again, given that I can't go out for meals and late nights are beyond me...I can't even kiss properly (I tried on a very good male friend who's had a thing for me for years!!!)
I also can't imagine having the energy to deal with those first few months....it's such hard work being nice all the time!....but I would like company...someone to talk to about the news and the good stuff, as well as the crap.....I have been debating whether to go on a dating website...the girls think I should...but how quickly should I disclose that I have "issues"?.....
P petronelMember
Hi Bramble.

I am not sure what a 'therabite' is. I have a night guard, which stops me clenching my jaw and I wear that most of the time. Dentist suggests that I try wearing it less, and I do try, but it depends on the amount of pain that is coming through at the time. Things seem to be fairly stable at the moment - but I think that is because we have got the level of pain relief and nerve blockers about right, but that could alter at any moment - and my lovely GP is leaving the practice - shouldn't be allowed! I hope my chosen alternative is as good and understanding.

As for purposely 'finding someone', I really wouldn't like to comment on what to do in that direction. Is there not some sort of counselling group you could go to where everyone would have their stories to tell and would understand exactly what is going on? You never know what kind of kindred spirit you might find. As you say, mouth cancer of any sort has different rates of recovery and have very different effects on people. As my doctor said, the experts are very pleased with themselves at having found a pretty good supposed 'cure' rate, but they really don't consider the after effects - and if any of them had actually been through any of it they might be a bit more understanding of the problems. I am sure that, eventually, there will be treatment that isn't quite so cruel.

Life's a bitch - then it has puppies.
V valeriejMember
Hi Bramble,I joined a dating site and did,nt know whether I could handle it or not,even the day I went to meet the man I nearly backed out,but I went and it was fine,we were friends at first that's all I wanted and then later we married.he was the first one of the site I met.like you I can't kiss properly but it's the person we are and not what we can't do.if the man is decent he will see beyond your imperfections like my husband did.give it a go,just be careful.take care.xx
B brambleMember
Thanks for the kind words....a therabite is a device used to stretch the jaw open using passive force which is supposedly better than any other method, but, as I said, it may be slowing the tightening of my jaw and closure of my mouth, but is certainly not forcing it to open wider....I call it the torture device because it hurts like hell to use it.
Saw MacMillan nurse today...she's been so supportive but, again, only in a general way. There isn't a local head and neck cancer support group....closest one is about an hour away and as I suffer from neuropathic pain in my hands, wrists and arms, I can't be sure that I'd manage the drive...apparently someone is trying to set up a local group, but when I spoke to him, he seemed to want to recruit me, not as a member, but as one of the group organisers and leaders...not sure I'm ready for that....I'd try to put people off radiotherapy!!!
You were lucky, Valerie, to find a partner in your first online date.....maybe I should give it a go.....
P petronelMember
I can quite understand that you don't want to drive for an hour to get to a meeting. If you were to help organise a new group you would at least be able to state your limitations from the start and then not too much would be expected of you. I can quite see why you would want to put people off radiotherapy, but you might be doing that in any group! Dating sites are something I have never thought about - as long as you remember to be careful.....

The therabite sounds like an instrument of mediæval torture - a bit like a scold's bridle but probably not made of metal!

Life's a bitch - then it has puppies.
B brambleMember
Whilst not made of metal, I certainly consider it to be a torture device....and I think I could probably even hack it if the bloody thing worked....
Of course I shall be careful if I try a dating site....I simply can't think of any other way to meet people...we'll see how I feel after tomorrow's appt with the team...they might discourage surgery...I don't know....will report back!
B brambleMember
Hello everyone...I have a new consultant...the one who oversaw my original surgery has retired, but the new one was his registrar then so was actually the surgeon who stayed for most of the 15 1/2 hours. Anyway, whilst sympathetic, he didn't seem too keen on coronoidectomy, which was the local max fax surgeons first suggestion...as for removal of scar tissue/replacement with live flap.....he reiterated concerns that irradiated tissue might not heal, possibility of increased pain, no guarantee it would work and even if it did, the tightening might well come back after a while....but I was quite upset and made it clear that i really am not happy to just sit and wait for my jaw to seize up altogether. Whilst I know they can't predict patient outcomes, I confirmed that had I known there was a strong possibility that I wouldn't be able to eat three years after finishing my treatment, I might have taken my chances without the radiotherapy. You'll probably think it's awful of me to say this, but sometimes I do wonder whether it's worth being cured, if the quality of life one is left with is so poor. At the end of the day, four of our five senses are based in our heads.....he confirmed that, after three years, any improvement with regard to saliva, taste, sensation/sensitivity and pain has probably reached its limit....so this is as good as it gets.....I got a bit weepy and he said he would speak the the head and neck maxfax team and also refer me to them and that he would see me again in a month rather than waiting for my next 3 monthly review, but generally, I came away feeling pessimistic...and my sister, who has been my rock throughout this whole ordeal, asked me why I was crying!!!!! I've tried so hard to explain how I feel and she says she understands that I feel angry, but she doesn't understand why I'm miserable....
I'm sorry this has been a rambling entry...probably doesn't make sense, but I've got a rotten headache and am feeling so pissed off...I'll come back tomorrow and try to be clearer...especially as none of you were around when I first joined the site and probably haven't got a clue what I'm ranting on about....
P petronelMember
Dear Bramble - poor you. I can completely understand why you feel miserable, not to mention angry. My jaw doesn't work properly, my mouth is incredibly sore, I find it hard not to choke and my tongue invariably feels numb. Add to that the fact that on and off for two days I have had blood pouring down the back of my throat from a nose bleed. My good GP is leaving the practice - sadly - but he actually made some sense this morning (no one else has managed that) by saying that he reckons it is all down to RT weakening the blood vessels and telling me it could be one of two things - one works by applying pressure to the bridge of the nose, whereas the other needs a plug.. Just what one needs. Thank God I haven't had a bleed today - long may that last...

I hope you feel a bit better for a good sleep.

Life's a bitch - then it has puppies.
P petronelMember
Yes, the need for ongoing medical intervention is annoying to say the least. I don't know when a new doctor starts but in the meantime I shall go back to a doctor I do know fairly well. I will be interested what the newby is like.

In the meantime please take care of you and let us know how things are going.

Life's a bitch - then it has puppies.
P petronelMember
Hi Bramble - or anyone else suffering these problems. How are you all progressing?

I have to say that things are rather worse for me now than they were in January and it seems to be Radiation Fibrosis - no fun. When I went for my most recent check I was lucky enough to see my actual Consultant - rather than an underling (who tend to palm you off with 'it is all neurological - nothing to be done'). Consultant has ordered me up an MRI - just to be sure there is nothing really nasty there. Then I saw the dietician and the speech therapist. I did see a speech therapist earlier in the year and she said that I was doing everything right, but things have now worsened. This is a different girl who has set me tongue exercises, which can be pretty painful but I have help from my Chiropractor who gets deep into masseter muscles and even tongue muscles. I have to have a 'swallow' X ray and then they see whether I need a 'gullet stretch', which sounds utterly gruesome....

My taste tolerance has become even more restricted. Going to France with a chum in September, using the same hotels as last year as they seem to be able to cope with me fairly well, but I am even more difficult now so I shall go with plenty of Fortisip (lovely) and be prepared to self cater.....

My speech has been affected pretty badly and strangers who phone me at 9o'clock in the morning must wonder what on earth I am on about - I know I am to be found with a bottle of cooking sherry on the worktop on a couple of occasions, but that is only when I have been making Wedding Cakes! That is the only use there is for sweet Sherry.
T TN_GrammyMember

My first post on here. I had fibula free flap reconstruction with a half glossectomy in May 2020. Just completed radiation in August and trismus & swallowing is challenging. I got off the peg tube after only 5 months because it was very sore. Have been eating protein shakes, but I can now eat many things as long as they’re fairly soft & stick together. Even pizza! Does anyone else on here need a stick to eat? I have a chop stick to push the food between my teeth. (Only 5 bottom teeth; full top teeth.) My doctor said this will not improve. But I’m doing my tongue exercises, so I hope it gets stronger. My speech isn’t very good, but I can be understood. I won’t eat out & it’s embarrassing to speak, but I feel pretty good otherwise! My diagnosis was 2016 so this is a reoccurrence. Still, I’m not ready to hang it up just yet! I’m 65 and have 2 grandchildren to live for! It’s inconvenient- but it could be way worse.

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