Hi Everyone
As the next part of my upper jaw reconstruction I need a lip graft. My top lip does not meet my bottom one properly which results in a lot of fluid coming out of the side of my mouth when I drink. There is no guarantee that the lip graft will completely help with this it is a bit of wait and see.
I am currently weighing up the pros and cons of going ahead with the op. It is 10 months since the last op for my upper jaw reconstruction and I am really enjoying life and am a bit reluctant to return into the treadmill of another op. Each op seems to set me back for quite a while and life is so good now.
I have a few concerns about the actual op. The graft will be taken from my lower lip and attached to my top lip. My lips will then be sewn together at the point of the graft for 2-4 weeks. I will have an NG tube in during that time.
I do a lot of mouth breathing as my maxillectomies have affected my ability to breath freely through my nose. My consultant says that there will still be gaps on either side of the graft so I should still be able to breath through my mouth but I am rather nervous about that. The thought of not being able to get enough oxygen to breath really worries me. I also have a very dry mouth from radiotherapy and frequently during the day and night have to put a dab of dry mouth gel on my tongue. The consultant again says that there should probably be enough gap for me to get a cotton bud in to put the gel on my tongue. However I am still rather apprehensive as things may not go quite as planned and things may not be quite as he thinks. The thought of having my lips sewn together for 2-4 weeks is not that appealing and my life will be on hold during that time. Do I want that? Do the possible benefits outweigh the short term issues? If the op does help with drinking then I can go out and drink in public more easily as it is rather a challenge at the moment and so I am reluctant to do it.
Has anyone had a lip graft and how did they find it? Any thoughts and experience gratefully received. This is the first time I have had a choice about an op and am in a quandary about what is the best thing to do.
Lyn
Crikey Lyn. There seems no end to this. I can try to help with the breathing with lips sewn bit ….. well sort of. I go through periods when my mouth gets so dry in the night I wake often and can’t sleep. I am comfortable nose breathing but my relaxed body obviously prefers to sleep open mouthed. I tape my mouth with a wide mouth tape leaving small gaps at my lip commisures. It keeps my mouth moist at night mostly. Sometimes I wake breathing through the gaps rather than my nose. Stan says I appear to be quite comfortable doing this and in no distress. I keep a glass of water with a straw by the bed and find it easy as pie to take a sip…. Even in my sleep.
Dont know if any of this helps.
Can your consultant point you to any more of his handiwork? Somebody else to maybe swap messages with?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Good evening Lyn, i know exactly what you mean about the fluid leaking from the mouth as it happens to me, i cannot use large diameter cups or glasses as it goes everywhere where so i use a smaller diameter which helps a lot. As you know i have quite a few skin grafts due to reconstructive surgery but have not had this one. I asked my consultant if anything could be done and he suggested having implants so he could fit a set of lower dentures, it did help but the body rejected the implants after 18 months so i had nothing to hold the dentures in place, although it did not work it was worth giving it a try, botox was also suggested to plump the lower lip up but he felt it would not work and he could not see an easy solution. Maybe this was not an option for me because of all the reconstructive work that was done or maybe was not available in 2009 as operating methods and plastic surgery are always improving, i think if i had offered at the time i would have gone for it but if the suggested it now i would be like you are now and sure what to do but would give a lot of consideration and if the consultant was as confident it would help not just the lip seal but the look of the lower lip. I suppose they sew it together so it helps to form the new shape giving the skin graft to take and heal up. I think the big question is will it improve your lip seal or make it worse it would be so lovely not to dribble as much. I wish you all the best and what your decision is. Very interesting.
Chris x
Hi Dani
Thanks for the advice. That sounds like such a good idea and I will definitely give it a go to see how I manage breathing. If it works out O.K. I will then feel more confident that I will be able to breath O.K. with my lips sewn together.
Not that I like the whole idea of having my lips sewn together, it sounds a bit like torture to me, but needs must. Your suggestion will definitely help towards making my mind up. If my consultant could give me a definitive answer about it helping with my drinking issue I would feel more confident in going ahead with the op but he says that there is no guarantee although he thinks it should help. It will probably improve the way I look but that is not such a great issue to me as my look is 90% better than it was before the reconstruction. It is definitely improved function that I am more interested in.
I will ask my consultant if there is anyone that he has performed the surgery on that would be willing to chat to me as you have suggested. That would certainly help give me some perspective.
Thanks again
Lyn
Sophie66
Thanks for the reply Chris and your thoughts. Much appreciated. Apparently the reason the lips are sewn together is that the graft from the bottom lip is still attached to my bottom lip while it is attached to my top lip and remains like this during the healing process. This keeps the blood supply going while the graft takes so it has a much smaller chance of failure. Hope that makes sense. Apparently the failure rate is only 1% using this method.
Yes the whole conundrum is will it improve my lip seal or make it worse. My consultant can't even answer that question although he thinks it will improve it. It would be great to be less dribbly.
Lots to think about. I don't have to make a quick decision fortunately not like it is when it is an op to remove cancer.
Lyn
Sophie66
Hi Lyn I feel for you such a difficult decision to make. Like Dani says try her method with the tape to see how you feel. Think she uses a special type of tape. @Beesuit. hugs to you and Terry
hazel xx
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Thanks for the reply Ray. The advice that Danni and Chris have given me has already helped. First hand experience would be great but it might not be something that others have experienced but I though I would give it a go.
Your kind words and support are greatly appreciated.
Lyn
Sophie66
Good evening Lyn, i know it's not the normal thing to say but this sounds so advanced and it does make sense Lyn as i know how important the blood flow is during skin grafts, I must admit the success rate sounds excellent but i know the emotions we go through when surgery is mentioned as we have been through a lot already. Just take your time and weigh up the pros and cons.
Chris x
Hi Lyn,
What a dilemma, you really are very brave even thinking about it after all of your surgeries. 10 months from the last one and you look great and are enjoying life. You might even enjoy it more after the graft has healed, who knows. Wishing you love and luck in your decision making and hope you can connect with someone who has had this exact operation to reassure you.
Wishing you the best! xxx
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