Still searching for my perfection

I had a huge Acoustic Neuroma 29 years ago at the age of 21 which was very touch and go, 15.5 cm in size , the surgeons took most of it out but had to leave a small amount in there as it was to dangerous to remove, since then it has regrown three times to a troublesome size which required removal, every time leaving some in, i was left with right sided deafness and total paralysis of the right side of my face, terrible balance problems, loss of smell/taste on one side , swallowing reflex and eyelid closure problems.

I have since endured numerous facial ops to try and realign the symmetry, a facial sling helped a little but wish i hadn't had that done , also many static facelifts which do help short term but gravity takes hold a couple of month later.

I do suffer mentally with this due to my appearance. others tell me its not bad but its me who has to deal with it .

Thats a little about my situation , and was wondering if any of you out there have had similar illnesses, and what sort of corrective surgeries have been offered to you, i didn't know until recently about facial nerve grafting , not sure if its to late for me given the time span but this procedure seems the best of any and wonder why i have never been informed of this by my medical team, if any of you guys out there can give me any info about this or you have had this done id like to hear from you.

Been nice to read of others experiences and look forward to any replies.

Colin

5 Replies

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  • Hi Colin, and congratulations on fitting your 29 years AN history into 1 paragraph-maybe you're a journalist or editor?!

    I can't say anything about facial nerve grafting (I've been very lucky with my AN), but if you look on the web, there is loads of stuff about nerve regeneration (and presumably, therefore, the ability of a nerve graft to "take" after surgery?). Despite what the medical world said for decades about the nerves' inability to repair and regenerate longer than 6 months after strokes, surgery etc., there is now evidence that shows amazing recoveries of nerves l-o-n-g after damage (years and decades). Maybe you could try doing loads of research via Google etc., asking people on all the brain tumour websites (as you are doing), and keep pushing your consultants and asking for 2nd opinions, and you may get some answers and some hope?

    I think so many people are in your position, it's a question of finding them and asking about their experience. Best of luck with it, I'm rooting for you.

    Ann X

  • Hi Ann ,

    Thanks for the reply, i've done so much research on this topic , and i have come to the conclusion that nerve grafting is the only option i will consider now and look at is as almost a last resort to try and improve my appearance and give me my self confidence back, i'm a glutton for punishment i guess and my friends/relatives wince at the thought of me going under yet again, but i'm so used to it now its like my 2nd job :), i do take on board their feelings but ultimately i'm the one having to cope day to day with this debilitating condition.

    Made me chuckle at the comment of yours a 'Journalist/editor', no i'm just a normal guy that was unfortunate and one of many people like yourself that have to endure life's nasty surprises , hope you are doing well and continue to do so .

    Col x

  • Just wondering why you wouldn't have slings again? They were mentioned to me and will be seeing the facial surgical teams. My ophthalmology specialist mentioned nerve grafts as well as a possible option so I'm keen to hear more about that option as well.

  • Hi Colin, your post was very interesting as my surgery was 29 years ago too. I had three neuromas removed in a nine hour op in Oxford. I wasn't great after the surgery, fits, difficulty swallowing, severe headaches, balance deafness one side - you name it. But over the years things have improved, quite quickly initially but gradually improvements take longer to detect. However now I'm pretty good, still have to be touching something when I put me pants on cos I'm not good on one leg. Tinitus in my right ear which I've got used to providing I don't dwell on it. My face has straightened up quite well and most people don't notice it unless I laugh. Left eye gets a bit dry on windy days because it doesn't blink as well as the other one (which after the op wouldn't close at all for six months). But I'm still here aged 80. Best wishes to all who post here. K

  • Hi has anyone mentioned the possibility of neurofibromatosis type 2 to you from your care team. My sister has this and has tumors in her brain but nothing can be done with hers. She is 63. A lot of your symptoms are symptoms of this disease. Just wondered.

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