Fistula in "free flap"

Hi Too Fast

Welcome to the forum and I am sorry for why you are here and what you are going through.  I have had a partial maxillectomy in 2009 and further resection.  I have had my own set of complications that hindered my recovery, and had to face the world with missing teeth and speech problems for sometime until I was restored.  I have no experience with a  fistula in free flap surgery as I was restored by a dental obturator alone. Someone may pop up with their experience of this.

Just to say I know how difficult and awkward it made me feel when I had my maxillectomy and was in between being restored.  Our missing teeth, Speech problems can be a real challenge. I felt awkward when I had visitors and avoided socialising.  Whilst I was going through recovery I only invited people in I felt comfortable with, as I felt very self conscious.   People say well meaning things I think to try to make us feel a little better and to try to encourage us. I know how you are feeling. I found doing things on my own terms slowly worked best for me. It is good to try to get out and about. In time maybe ask a trusted family/friend to accompany you out when you feel ready somewhere quiet to start. This could certainly  help you start to regain some confidence. It also helped me build up on how to cope with things in the meantime until I was  restored. 

I hope this helps a little, I wish you all the best.

Nicky 

Hi Too Fast

I am so sorry to hear of the fistula developing. That makes things really difficult for you. I had a maxillectomy but as I had all the teeth still on the other side of my mouth I had an obturator that could attach to them and did not have a skin graft.

I know how hard speech can be when I do not have my obturator in and in the early days when I had my first obturator and it did not fit well I could not pronounce some sounds correctly and that made understanding my speech somewhat difficult. I sometimes had to resort to writing some things down. I did see a speech pathologist who gave me some good tips about making sounds but even with that sometimes it just did not work. I found amongst other things that ‘d’s’ sounded like ‘n’s’  and I sounded very nasal.

Could your speech pathologist suggest anything that might help ?

This is a really frustrating time for you but from what you say it sounds as though they will eventually be able to fix the hole so there is light at the end of the tunnel.

Nicky gave some really good advice about starting to try to get out as isolation is not good for you.

I am sure your family understand your situation. I know my daughters say to me that I am not too hard to understand when I do not have my obturator in and are very accepting of the way I look so I would not worry about that.

I do hope things go forward quickly for you in getting the repair done.

Best wishes

Lyn

I think your post sums up the particular challenge of head and neck cancers perfectly.

All cancers are difficult to deal with, but as well as coping with treatment, recovery, uncertainty and anxiety and changes in function, head and neck cancers often result in change in appearance which is upsetting, to say the least.

On the plus side, surgeons dealing with head and neck cancers have become very skilled at preserving function and appearance as much as possible, and although recovery, repair and reconstruction can take time, the final results are often much better than we expect.

You are obviously experiencing particular difficulties at the moment, and anyone would struggle with that, but it also sounds as if you aren’t at the end of your recovery and reconstruction journey, so I hope you find that your eventual outcome is something you are comfortable with.

Just sending you the warmest thoughts and hope that you find a way to come through all the challenges and are able to enjoy life fully again.