after removal of 98% - looking for info inreguards to experiences with regrowth

[cpollard]

Hello all - Im new to this site but not AN's - as the type of person that has always buried my head in the sand and just gone along with things with positivity - its starting to wane... initally I was 23 when my then 38mm AN was found - 6weeks later after a 15 hr surgery most of it was removed and it had increased to 40mm in that short time - as you can imagine my face on the left went south big time - my amazing surgeon had to leave a piece behind as he would of needed to cut right through the facial nerve - by then my ear drum had dissolved and also my balance nerve - so post op it was a quick recovery - except for my facial nerve - howeva 7years along and its pretty good considering - howeva 18mths ago the tumor had grown and started to change shape - this is my question...im due to have another scan in Jan so I will no for sure but im starting to get abit stressed out - some of my symptoms have returned and I know the little bugger is growing but how fast??? my grew rapidly at the end would it do that now or just slowly??? also for people who have had more surgery or radiation what did it do to your facial nerve i have 2 young boys and thats what scares me the most - ive worked soooooo hard to regain the movements and toning in my face - I dont want to start over again - argh - im just having a moment - lol - sorry its a novel - like i said im new to this and just looking for some info thank you

[Kathleen_Mc]

Hey were very much the same here, both had very large tumors at age 23 and re growths!
When my regrowth was found it was tiny, I had yearly MRI's done for a few years before having it removed, it grew about 1 mm - 1.5 mm per year each year, no growth "spurts" as can happen (lucky for me). I choose to have it removed while still small and my children young so they wouldn't remember me being so sick (also they were too young to fully understand hence weren't scared, I called it a bump in my ear and they didn't question it....not as scary as a brain tumor).
I found surgery the second time around very easy compaired to the first. I had lost all that I could loose the first time around (hearing,balance,facial functioning etc) so there wasn't all that adjustments to get over. Once I recovered from the surgery I returned to where I had been in functioning just prior to the second surgery.
Hope this helps.
Kathleen

[cpollard]

Kathleen

I really appreciate writing about your experience - after writing what I had and mulling over it - I to thought well whateva happens Ill just deal with it sooner than later & get the surgery or whateva is required - Thank you so much - its made me feel alot calmer and you have answered all the things I had been worried about

Sending you big hugs!!!
Carrie

[Kathleen_Mc]

Carrie: Glad I helped, that's what "it's" all about. Keep us posted on what's happening.
Kathleen

[Jim Scott]

Carrie ~

I'm sorry to learn about your re-growth and want you to know your feelings of frustration are totally normal and understandable.

You have two options; another surgery or radiation.  I would opt for the radiation, if it is feasible in your case.

I had my large (4.5 cm) AN 'debulked' (thinned out) it's blood supply severed, then (90 days later in a planned procedure) radiated via FSR (26 sessions).  My neurosurgeon took the surgery/radiation route to spare damage to my facial nerve.  I'm eternally grateful to him for doing so as I never suffered any facial nerve problems following the surgery.  In fact, I suffered no real complications from the surgery and the radiation was uneventful.  My symptoms disappeared almost immediately following the surgery and the remaining tumor showed necrosis within two years.  Today, six years later (from my surgery date), I'm doing great with no AN-related issues other than being SSD, as I was prior to the surgery.  My balance is good if not excellent and I never experienced any headaches before or after the surgery & radiation.  I trust that you'll be able to determine a course to deal with the re-growth in a way that doesn't have a negative impact on your facial mobility.

Jim

[cpollard]

Thank you Jim for your story I really appreciate it This happened in NewZealand where I was born & bred - now I live in western Australia so Ill head back home next year to have a MRI scan (thats where my insurance works and my amazing surgeon is and go from there - i want it gone though - i know that forsure my headaches & neck aches have gotten more & more frequent so like it said its gotta go

Thanks guys and wish you both (everyone) well

[It is what it is]

Thanks to all of you for posting your stories. I am reading them with interest. 

Since sticky tumor was left behind on my facial nerve in an 8/1 surgery, I am now interested in what happens with regrowth.  Anyone else with regrowth on facial nerve and how did you deal with it?

My caring and thoughts and appreciation are with all of you. 

Please let us know how things go for you Carrie.  It must be so much more difficult to deal with this stuff when you are young and/or have young children.  My respect and warm wishes go out to you. 

Karen