21 months past

[epifania74]

Gidday ANers!!

Well its nearing 21 months since I was operated on, I'm still here and still going strong. My son had his first birthday a month after the operation we had a big birthday no doubt. A roast pig on a spit..real pacific island birthday..(sorry to all the vegetarians that share this site)

I remember at the time I felt stink and horrible, it just felt like everyone was watching me. Like I had two heads..or something..What I didn't realise that my mum and family were soo happy that I was around to celebrate my son's birthday and that they were not holding a funeral for me.  I guess if you put it that way..then I'm lucky.  I remember the surgeon saying there was likely chance of death..what can you say..nothing. Theres just a deafening silence in the room, what could my husband say..he sure didn't want me to leave him.  You watch the sunrise from your hospital window like its your last, and pray that you'll see many more after today.

He took my son and went home as he waited for the op, he waited for a full 15 hours before the surgeon rang with the news..Saying that he was nervous was an understatement.

Here I am happy and loving life..My face is straighter..looks normal until I speak.  I do daily massages on the face..drs have said it will take a couple of years for the nerves to grow, so I know I have a long way to go.  The only piece of advice I can give is don't give up..there are people that don't and won't give up on you.  Cherish those around you, because when its their turn to need somebody you will be there.

[jazzfunkanne]

Hi there we must have had our ops round about the same time i am nearly 23 months post op, and your doctors are right the nerves do take a good couple of years to grow back (all depending on the damage to the facial nerve) watch size was your AN. take carex

[epifania74]

Hello back again!!

In answer to your question..Yep my tumour was 5.7 close to almost 6cm.  There was only a pin hole left and the doctor said if that was covered I would not be here today. I can't remember what he was saying because I was in total shock.
But surprise surprise here I am  .  My operation was in February 2007, they couldn't remove all of the tumour, I had one dose of radiation in March early this year hopefully its killed or shrunk it in size.  Oh well fingers crossed 

I won't know the radiation results till I have my MRI done and see my surgeon Feb 2009.  So hoping for some good news!!! The best I can hope is death to the tumour, shrinkage, or the fact it hasn't grown..Well let me know your progress how things are going..Its good to see you have almost the same timeline..Now and then I get electric shocks in my lip, like it wants to wake up. 

Well dear have a "Happy 2 year anniversary" Prayers and blessings to you and your family.

[jazzfunkanne]

Hi there i had my op in dec 06, i get those electric shock feelings in my face as well, i cant believe your AN was so large how old were you at the time, did they say why it had grown that big, what symptoms did you have, my AN was over 4.5cm when it was picked up and the only thing wrong with me was facial numbness, was your facial nerve saved during surgery? mine was saved but i was left with grade 6 facial palsy which is now about a 2 i am just beginning to see changes over the last few months so it is a long haul.
lots of love to your and your family x

[epifania74]

I was 33 years old, with an 11 month old baby.  I remember him taking a ride with me in my bed to the operating theater.  I remember my heart breaking for I didn't want to leave him without his mummy.Hmm funny I seem to just shrug it off the size of the tumour.  My dr said it would have been growing since day dot..which is why it was so big..slow slow growing..Probably a week before the operation I began to get the horrendous headaches, I would finish taking an asprin just to take another one in the allowed timeframe.

My husband said enough was enough he was going to drag me kicking and screaming to the dr, to find out the cause. Yep we found out the cause alright within a week I was prepped and ready for surgery..It seems like a lifetime away, but I am thankful that my husband didnt listen to me..very thankful!!

Facial nerve is still intact, but the dr said its stretched...They had to cut the nerve which allows you to hear because the tumour had entwined itself. Hmm yes I think my face was a grade six back then and is also a grade 2 now..Far out can you just be from the Twilight Zone he.he..I know I know recovery is a long haul..but I am glad to see it with my son and loved ones..Keep me posted will update you if I have any more progress.  Love to your fam as well xxooxx

[leapyrtwins]

Epifania -

thanks for sharing this wonderful story with us.

I'm glad your husband convinced you to see the doctor; it's usually the men who have to have their arm twisted - no offense, guys 

As I'm sure you know facial nerves take a long time to recover, but it sounds like you are doing very well, especially in light of the fact that your AN was so large.

Please keep us updated on your progess.

Jan

[calimama]

Hi Epifania

It sounds like you live in the magical south pacific area... you lucky thing you. I lived in Australia for nearly 5 years and still feel it in my soul. I actually dreamt i was there last night, as i do often.

Anyway, just wanted to thank you for talking the time to share your story and your positive energy. So many of us here are always glad to hear of "happy endings"... however long they take to evolve.

I was 38 (only a few weeks shy of 39) with a 10 month old when i got my diagnosis and what a shocker. Now 5 months out I am too happy that my double vision has finally resolved and i am doing great despite the facial paralysis. I am happy to hear  stories like those posted here of recovery...however long it takes. I too am just so grateful that i am 5 months post op, alive and well and enjoying watching my little sweet pea Cali grow into a beautiful little girl.

Good on ya....

Trish in Toronto Canada

[Jim Scott]

epifania74:

Thank you so much for your encouraging account of your AN experience.

You certainly had a jumbo-sized tumor but seem to have come through the surgery quite well, which is heartening to many, I'm sure.  As a bonus, your recovery seems to proceeding apace.

I also had surgery + radiation.  Very few post-op complications, none from the radiation (FSR - 26 treatments) and 28 months later, I'm good, thanks. 

I have no doubt that you'll fully recover your facial mobility as well as overcome any other deficits you may have.  Of course, it may take a few years but you'll do it, I'm sure. 

Jim

[epifania74]

Gidday everyone!!

Just like to say a quick hello and thankyou to everyone on this site.  Yeah live in Sydney Australia, background Samoan but brought up in NZ before moving over to Australia.
At the moment I have gone up to QLD to see family, for anyone that doesnt know its about 12 hours drive up north from Sydney.  My family have said they have seen vast improvement in my face which is always encouraging to hear.

I found some old photos of when I was in hospital..I couldn't believe it was me..I looked so anorexic..the facial palsy looked real real bad..Made me feel sad for the person staring back at the camera..My brother who came interstate with his wife and child took video clips of a skinny me struggling to just take a few steps forward, with a loving husband at my side.  I saw a broken body recovering, but the unbreakable spirit spoke volumes.  The warmth and love could be felt in the clip, radiated out towards anyone watching.

I have come a long long way, and love that this site is here. Hmm wanting to have more kids, but still have to get an mri done next month, see the specialist next Feb 2009 probably go from there.

Thankyou (Jim, Jan, Anne and Cheri) to all that have replied to my post..we have all been through alot.  I wish everyone the best in their recovery and would like to hear about updates.