Restorative Surgery - Polymorphous low-grade adenocarcinoma

Hello, 

I’ve had similar surgery, in that it involved a patch/vein from my wrist to repair inside my mouth (actually lower jaw area) following cancer.

The repair healed well and I can eat and speak normally. My arm has a silver scar (two years after surgery) and functions normally. The only interesting outcome is that when a paramedic checked for a pulse after an unconnected accident they couldn’t find one! There’s no vein there to take bloods from either. But these are minor inconveniences.

Like all major ops, there is a recovery period, but this sort of reconstructive surgery has been a success in my case, so I would recommend.

Hello Daffne,

Thank you so much for taking the time to contact me.

It’s very reassuring to hear about your experience. I’m glad to hear that it’s all gone well for you. 

I never thought about not having a pulse! But it does make sense when you say it.  

Right now I don’t have a date for the operation, although I have been told that it should be before the end of the year.

I feel like I’m living in a bit of a limbo at the moment, but reading your message has helped me, things will get better.

Did you have a long wait between the cancer removal surgery and the restorative surgery?

My operation was removal of the cancer and the restorative surgery all in one op, lasting about 8 hours plus. I think this was necessary in my particular case with the cancer on the lower jaw. The restoration aspect was called a radial forearm free flap skin graft, which sounds like what is proposed for you, albeit to a different part of the mouth.

The recovery takes time after any surgery of this kind, and there are always risks. I do have some odd sensations of numbness around the areas of surgery, including around the wrist area where the tissue for repair was removed from. But it’s not a problem.

Hi Strictly

I had an obturator after a maxilletomy for jaw cancer in 2019. I then had to have another maillectomy in 2022 so there was no longer anything to hang an obturator onto. Consequently I had a graft taken from my forearm and grafted onto the roof of my mouth to cover the hole. I then did not have any upper jaw or teeth for a year until I had reconstructive surgery. It is definitely great to have the roof of my mouth restored. I was told as you were that there was always a small chance of the graft failing but they had a back up plan. They monitored the blood supply using a doppler while I was in ICU and said that if the blood supply failed then they would take me back into surgery and then take a graft from the skin on the side of my head. All went well and I now have the roof of my mouth back in place. The skin graft area on my forearm looked like a dog had bitten a chunk out of it for a while. Initially it was rather uncomfortable and tingly. Now it is fading and not as evident. It does still fell a bit tingly and there is a slight reduction in my wrist movement but nothing that is a problem.  It took about 8 weeks before I felt back on top of things after the surgery.

I had to wait a year for my reconstructive surgery so had to eat only puree and drink from a straw as I had no teeth. Also I had a very caved in look to my face. I had reconstructive surgery in Feb this year. I felt I was marking time in the year I was waiting but then decided to get on with things and joined an exercise class and started volunteering at the local library and that helped as I felt I was not just waiting anymore.

My reconstructive surgery was not using bone as there was a high chance of failure. I had a metal prosthesis attached to implants put in my cheek bones and a denture attached to that. Initially I had operation remorse as my eating and drinking got worse rather than better. However I have just had a second improved set of dentures to replace the first ones and it has made such a difference. I can now eat better than when I had the obturator and am now able to eat pasta, rice and eggs and even managed a biscuit. This is a great improvement from only being able to eat puree. Things have definitely improved since the reconstruction in Feb although it has taken 6 months to get to that point. The sensation around my nose and part of my face has been affected but nothing I can't live with.

I am definitely glad I went ahead with the restorative surgery now although I did weigh up the pros and cons before and was rather nervous about the surgery.

Best wishes with the surgery. Things definitely do get better once you get through the recovery time.

Lyn

Hello Daffne

That does sound like the same type of restorative surgery. 

You say that you sometimes get sensations of numbness around the wrist - is your mobility back to normal?

How long would you say that it took for you to get to the ‘as good as it’s going to get’ stage of your recovery?

Thank you so much for getting in touch and answering my questions. I really appreciate it. 

Dawn

Hello Sophie66,

Thank you very much for taking the time to message me.

Sounds like you have been through so much, but hopefully that is all behind you and your quality of life will continue to improve. 

The impression that I’ve gotten from both you and Daffne is that although there are minor side-effects such as tingling and numbness of the donor arm,  having the roof of your mouth restored definitely outweighs the cons.  

I’ve also found that exercise helps elevate the worry. I like walking and going to aquafit. I live on my own so can go into a dark place if I’m not careful.  

Take care and enjoy being able to eat biscuits!

Dawn

Hi Sophie66

I am in a situation like what you have been through at the moment I have an obturator to cover my hard palate, the tumour was also attached to most of my jaw so I have had that removed too, the obturator is held in by pins into my skull. I currently do not have any teeth at the front or right side of my mouth which is very hard for me and have lost all confidence in myself 

I have recently had radiotherapy and am told that it is working and have another scan booked for October, I have seen the maxilofacial surgeon and he talked about two options, one was to have an obturator made to be taken in and out held in by magnets but would have to see the restorative dentist to see if this is possible as I do not have the jaw bone.

The second option was a bone graft which he said is possible to do but comes with risks, my concern is that he said it could be likely that I will not be able to have implants onto the bone leaving me without any teeth permanently.

As what you have been through is very similar to my situation I would appreciate any advice or information you have on this.

Dancey 

HI Dancey

So glad to hear that the radiotherapy has worked, that's wonderful.

That's a tricky dilemma having to chose between those 2 options. You can only weigh up the pros and cons. Having gone for a year without any teeth or upper jaw all I can say is that I am now so happy to have teeth again. Eating without teeth is  a bit problematic as you can only eat puree which is a drawback and eating in public was definitely not an option for me. Also the physical appearance is not very pleasing. I was rather embarrassed to go out in public and would usually wear a mask which was O.K. as COVID was still a thing then.

For me I would definitely go down the route of having teeth if that is possible. With the bone graft option can dentures be attached somehow? Also you need to know definitely with the obturator option if the magnets idea will work. They told me that without a top jaw an obturator was not an option for me but your situation may be different. I know there are drawbacks with an obturator but it is certainly better than not having any teeth.

The bone graft option is a big op and can take a while to recover from so that is also something to consider. However if you can have a denture with that option it is definitely worth considering.

You need to make the decision that is right for you so write out all your questions and then discuss with your surgeon. More info may make the decision a little easier.

The ops we have had definitely change things and you have to adjust to a new normal which takes a while. So much socialisation takes place around eating and I have had to find ways and means of working with that. I definitely don't miss out on any get togethers just because food is involved and I have worked out ways of managing holidays so I can cope with the food issue. I have also had to adjust to a change in my appearance but I now look 90% better than before I had the restorative surgery so am very happy with that. I definitely don't feel the need to wear a mask anymore.

Once you have made the decision it will be easier.

Best wishes to you

Lyn

Hi Sophie66

Thank you for your reply, 

This has already been such a long journey with it coming up to two years now with having no teeth or jaw this makes me feel very enclosed from the world around me, all I want is to be able to some normality back.

I am glad you are now able to socialise and feel the confidence with your new look.

Thank you for your feedback it is nice to hear that I am not the only one in that is or has been in my situation 

Dancey 

Hi Dancey

2 years is a long time. I found 1 year long enough. I do understand how you feel as my confidence was low as well and the feeling of marking time waiting for reconstructive surgery was too soul destroying for me. That was when I decided that I needed to get on with things and try and work around my embarrassment about the way I looked and the issue with eating. That was when I joined an exercise group and started volunteering at the library. It still was not easy but I found getting out and about took my mind off things. I still did not like anyone other than family members seeing me without the mask and having my photo taken was a no no. I guess my pride did get in the way of things. It is hard to adapt to a completely different appearance and one that is not very pleasing. My surgeon always told me after my second maxillectomy that it would get worse before it got better and he was so right and it is definitely better now. I still have some issues with my top lip not touching my bottom one and so am a bit toothy and that does affect my ability to drink from a cup but I am working around that.  I have been told that I can have another op to try and fix the lip issue but I have had enough of ops at the moment. I feel that my life is just getting back on track again and don't want to spend more time on ops even if it will make me 'beautiful' (ha, ha).

Hang in there as it does get better.

Sending hugs

Lyn

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