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hi all, my dads been suffering with Osteoradionecrosis for quite a while now & they have given us 4 weeks to decide on reconstruction (which he doesn’t want as we have been told it’s never worked on the ones they have done before) so they have said about removing it and using chest skin to place back on the area. He’s really scared as it’s such a set back he’s done so well. They have said about having a PEG which he’s also dreading.they can’t say if it will be permanent or not and I was wondering if anyone has had this done and managed to eat again or have a cup of tea? After partial tongue removal and neck dissection he eats Normal food and a lot of desserts but he’s happy with that he has to mush a lot up but can eat with the family and dunks biscuits in his brew it would be awful to have all this taken away as he’s just got used to this being his life from now on. Please someone reply we’re so scared & also the risk of not waking up from procedure after the damage from radio and his windpipe being smaller
I can't help with the jaw but the PEG is nothing and was a big asset for me. there are others that have had reconstruction and I am sure someone will be on some time soon, it is usualy a bit quiet on here at weekends.
Thank you so much for the reply ron he’s worried so much as it’s taken him a while to get to a stage where he’s eating quite a nice variety of different foods. I wasn’t sure if anybody had eaten mushed food and had a drink whilst having the PEG
There is no reason why you shouldn't eat and drink while you have a PEG, in fact you would have to before it was removed and it can be handy to put those vile drinks into as they taste horrid. The tube itself I just tucked into the waistband of my trousers and wasn't a problem in fact it was useful to get extra water in as you have to flush it before and after use, I don't know but I think he may have a problem eating for a while. I was on overnight feeds for a time as I could only get soup down and that was slow so you don't get enough to keep your weight up, I still lost some. I would say it is an asset and not a big problem.
Good evening JoJo, I can fully understand about your concerns as he has certainly done well in reaching the stage he is at now , my story/journey with cancer is quite complicated and long so I will just give you an outline so you can maybe see the good and bad points . Firstly I would strongly recommend having a P.EG fitted as swallowing can be a problem , even if your dad does not use it the option is there.
I had cancer of the floor of the mouth and a bit of my tongue followed by radio and chemotherapy in October 2008 and had skin graft taken from my forearm , I did use my PEG as I had to wait until my surgery healed before I could eat or drink ,once it did I managed to eat like your dad ,soft food ,soups etc . All was going well until August 2009 where my lower teeth became lose so I was seen straight away by my consultant who told me a tumour was in my jaw bone so needed to have a reconstructed jaw . So I had the operation to remove about two thirds of my lower jawbone. The new bone was taken from a bone in my leg as well as tissue etc ,plus tissue from my stomach ,the operation was a great success and it all healed up ,although one skin graft did have to be re-done . My jaw does not open as far as it used to plus all my lower teeth were removed with the old jaw bone. So I suppose it depends on how much of the bone they think they will have to remove , the smaller the better, As you can see I survived the procedure I doubt if they would put your dads life at risk , although its like any operation when you are sedated there is always a risk ,but I expect he will have a trachy fitted in his neck I did . As I say it all went well and they even made as set of bottom teeth for me . My swallowing did not recover fully due to damage done on my previous operation so I don't know if this will affect his swallowing , so I still use the PEG but can swallow thin liquids ok ,so it not all bad ,for me anyway . Unfortunately the cancer came back in 2010 and I had to have my voice box removed but since then I have adapted to my new way of life .
I know it all sounds scary but I never looked to deep into what lay ahead and took things and dealt with them as they came, I think it all hinges on how much they have to remove . I did have bad days but managed to overcome these ,as my consultant used to say its not a walk in the park but its doable . Sorry to waffle on but hope this information is of some use to you and your dad . Best wishes .
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Oh chris you are very brave god bless you for all you have gone through. I’m so terrified as it just reminds me of his first operation & how badly it effected him. Thank you so much for your reply I’ve just read it so my dad he’s seeing the positives more. Thanks again Chris xx
No worries ,you are welcome Jojo ,please re=post if any of you have any concerns and we will try and help on here . Take care .
Hi Chris, we were told that my dad can’t have reconstruction as it will be to complicated for him. They are booking him in for the PEG and an appointment to have jaw bone removed can I ask do you know how this may look? And will the peg be permanent? Sorry for the questions xx
Hi Jojo2210, I don't really know how this would affect his jaw line maybe there will not be a lot of difference just that it will not have any strength so eating could be a problem if biting or chewing is involved , but maybe soups etc will be the best way forward and the peg might not be needed on a permanent basis . Remember im not qualified but this is what might be the out come . No apologies needed , but please let us know how it all goes , Wishing you and your dad all the best , take care .
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