Hello, I would like to know how many of you out there are having problems with your jaws after surgery ? I am in constant pain and the fact my jaw shuts like a clam when it feels like it, Therabite does not seem to be available at my hospital, like to hear from you all. Garance

Garance,

Occasionally I get slight jaw cramp. Fortunately this is overcome by a little jaw exercise.

I am 16 months beyond completion of radiotherapy. I have a few other minor ailments: dry mouth, limited taste but otherwise apparently progressing OK.

However, I have an immediate rush of fear when I experience any unusual symptoms which, of course, at my age can be expected.

Nothing to match your situation of course.

Regards,

Hi Garance,
I still have very limited mouth opening despite being given a therabite to exercise with. Stretching my jaw is really painful and I find it difficult to motivate myself to do the exercises especially as I see little progress. I manage to eat most things now though even though I have to cut things up into small pieces before I can get them into my mouth,and my speech is ok so I have decided that I can manage if it never gets better. I had to have fibre optic intubation to create the airway when i had my recent mastectomy and the anaethetist said I would always have to have that procedure if I needed further surgery.
Like Fran, I still suffer from a dry mouth, particularly first thing in the morning and though my taste is mainly back I can't tolerate spicy foods now or alcohol.
Is there anyone out there with an obturator( a prothesis to cover the hole in my mouth)? I would like to hear how others manage living with this.One of the main problems of the limited mouth opening is having an impression done to make a new obturator. They have just got round that by doing an impression while I was under anaesethic for the mastectomy. But I don't want to have another op just so I can get another impression done!
Anyway , best wishes to you all!

Hi, sorry to hear that you have had had both the throat and breast, I don't know how you have managed to cope, makes me feel a bit of a winging nuisance.

Well I was told without a prothesis I would find it difficult to talk, but have managed, however eating and drinking has been very difficult.

Charing Cross doesn't seem to run to a Therabite, so I am putting up with pain in the upper jaw, I wear the rubber guard on the upper teeth at night so when the jaw locks it is not so bad.

Keep me posted how you are coping. Big Bear Healing Hugs Garance

Hello Maggie I was interested to read that you have had to have the awake fibreoptic intubation as I haven't come across anyone else in that situation. I too have to have it because of all the disfigurement around the throat area. I've had it on three occasions, the first two by the same anaesthetist and I found it very distressing. But the last time was a different anaesthetist and it wasn't half so bad. I think he must have given me a larger shot of sedative as don't remember much about it. I definitely want him if there has to be a next time!! As Garance says, you have really been through the mill. We don't always appreciate what others have been through or have to put up with unless they share their experiences with us. All good wishes to go from strength to strength. Brenda x

Garance, you are certainly not a whinging nuisance! I get the impression from your posts that you have been through an awful lot and are still suffering. I don't feel I've had it any worse than the rest of you. As for coping, I think we just do when we have to. I wouldn't have liked to know in advance what I was going to go through in the past 12 months, but when it happens you just have to get on with it!
Brenda, I am sorry your experience of the fibreoptic intubation wasn't good. I was dreading it when the anaesthetist went through it beforehand, but she gave me lots of sedative and local anaesthetic and like your last time, I don't really remember much about it. I had to have it twice in two days, because after my mastectomny I had a bad bleed and they had to operate again the following day. The stupid thing was that although it was the same surgeon it was a different anaesthetist and when I got to the theatre he had no idea that I needed the fibreoptic procedure! Don't these people read your notes?! Anyway, apparently it's now down to me or next of kin, in case of emergency, to make sure I inform the surgical team if I need surgery in future.
I am really beginning to feel better at last after several weeks of being quite ill. I was severely anaemic after the last op and then the wound became infected with MRSA but I am now making good progress. I start 3 weeks of radiotherapy on the23rd and then I hope it's an end to treatment. At least this course of radio isn't going to cause the awful side effects the last lot to my mouth did!
Anyway, love and best wishes to you both

Hello again Maggie About the fibreoptic thing - I had a disc made which I wear with my gold cross and chain around my neck, it has all my details on about needing the a.f.i. just in case I am in an accident and can't tell the medics - and just hope they notice it!! All good wishes B x

Maggie, thank for letting us know re reminding the surgeon ( left to the next of kin) what about us folks who are on their own ?
If you are anaemic, and cannot take the pills, there is natural iron water from snowdonia (Wales) it comes in a box 28 days supply, and does not have the side effects that the pills have i.e. the runs or reverse blocked.
Keep us posted how you are coping. Big Bear Healing Hugs, Thinking of you when I want a whinge

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