Survivors

Another survivor, meet Alex...

I have been contacted by someone else who has been effected by Cancer and had to have extensive surgery which included a Maxillectomy and sadly his eye orbit.

Alex at this point wishes to remain fairly anonymous as he has been suffering over the past 13 years to get his obturator correct. So much so, that he in fact has been making his own! This I don't understand - I have been so fortunate with the care given to me, I do not understand why someone else in a similar position wouldn't receive, in the least, adequate care?

I need to point out that this is one case, I have no idea where Alex is from other than he is in the UK and have no idea where he was treated - perhaps his story will ensure that no one else has to suffer in this way:

Here is Alex's introduction to me:

Hi Will,  Pleased to meet you, After my opp  I never found anyone to talk too . Many cancer sites relate to all cancers but ours are only 2% of cancers so not many there. Been reading your events, brings it all back to me when I went through it was 13 years ago, as you know I had cheek bone an eye orbital removed and follow up with 7 doses radio therapy, ( 1 year after opp I had cancer again in Lymph Gland, removed ok then radio therapy again)

Alex's table, making and adjusting his own obturator! Click for larger version.

 The restorative work, for me was very sub standard, I have  in the last  2 years made my prosthesis correct. 

Beware of the fitting of the obturator it is not just a whole filler, it should replicate as a prosthesis maxilla exactly.& cheek bone in my case.

What they made for me in restoration was a complete oversized monstrosity, I was in pain for years, after 100's of appointments with my Orthodontist who did not know how to make it .( At the time I thought was normal). It should have been done by a prosthodontist which the hospital don't have for maxilla.

Eventually in 2009 my orthodontist, who I got to know well, give me acrylic resin to use at home, and I rectified the shape of my maxilla prosthesis.

I looked at many maxillofacial sites, one in America where they scan and replicate the maxilla properly.

With mine I had to take about 3cm off it, and done the best I could to replicate, It has been really good now since I done that but its taken 2 years almost for the muscles in my mouth too heal, as they had to grow back after such stretching of the buccinators.

 Of course after rectifying the maxilla, I had it copied at the lab in hospital, and after my mouth healing back, I am now waiting on another copy...

More of Alex's story to follow...