hey there.

[satman]

just wanted to drop in and say hi, some of you know me and some dont. i had stepped away as i was trying to put all of this behind me but no such luck, lol !
i hope everyone is doing well / the best you can, as for me, i'm getting along ok.
right now i still have no facial movement,ssd,drink from straw,no blink reflex and only have about 80% balance but hey, things could be worse.
i was shaving the other day and noticed that my AN eyelid was fluttering/pulling, which i take to be a good thing as i havent had any movement since the surgery in 07 , if anything it gives me hope.

 

[Syl]

Excellent news that your eyelid shows improvement. Those little signs of improvement are what I live for. In my case it's my balance, wonky head, and headaches.

I find it impossible to put all this behind me. It gets easier to deal with the new me and all that it entails, but so often I find my life affected by headaches, balance issues, hearing difficulties, etc. So how can we put it behind us? We have to take it one day at a time.

Syl

[satman]

Syl you are so correct "it gets easier to deal with the new me".
i just took a stroll down memory lane reading my intial posts and all i can say is WOW what a different world that was back then.

[nancyann]

Hi John:  so good to hear from you.  FLUTTERING/PULLING ON A PARALYZED SIDE ??!!!!!!
That goes against the word "paralyzed" !!!    That is great news !!!

I still have paralysis but am open to miracles !!  Meanwhile enjoying life to the fullest !!
& yes,  what a difference a 'few years' makes....

Let me know if this continues for you.  Remember,  give it time,  seems like some nerves are slower than others (lol).

Always good thoughts,   Nancy

[yardtick]

Hey Satman,

So nice to hear from you!!!  I find it amusing that to read you are "getting along ok" because when ever I'm asked how I am doing I respond "ok".  It is almost 4 years since my facial neuroma was debulked and I am still suffering from massive headaches and facial pain.  "OK" is so much better than "not to good" when asked.  I think to really understand what any of us have been through is to walk in our shoes literally.  Some are very lucky and have no real issues other than SSD, but others battle every day with headaches, facial paralysis, balance issues and depression. 

Getting use to the "new me" is very difficult when I have changed so drastically and I am reminded of it everyday by either my husband or sons.  I haven't worked outside the home in over 2 years, because of headaches and facial pain.  I feel a part of my heart and soul was removed during the surgery because the Dr had no idea I had a facial neuroma when he operated.  Since he wasn't prepared, I wasn't prepared.  It was a very lonely journey the first year after surgery and it wasn't until I found this forum I got educated very quickly I understood I wasn't alone.  Hindsight is 20/20!

Take care and don't be a stranger,
Anne Marie

[4cm in Pacific Northwest]

WELCOME BACK Satman Super EIGHT! 
 


I SOOOH missed you.

I am very glad you are back... the forum has not been the same  without you. Last month my upper lip was twitching like crazy- this month we are seeing movement. Yup almost at 3 years and nerve regenration is still happening. It is like watching a slug cross a tennis court in the rain... (It is raining again here in the Pacific Northwest and I feel like a banana slug)

DHM (the old "4")

[satman]

even though i have been absent from the forum not a day goes by without thinking of you guys.
to my buddy 4- its great to hear that your getting some nerve action , AWESOME ! 
Nancy-yea im getting some weird fluttering and pulling on my crazy side, gotta be good right ?
starting to get a little freaked out because last week it was fluttering and pulling like crazy and for the last two days its done nothing so confusion has set in.
yardtick-whats the doc say about the headaches ? it just never seems to end   

[Jim Scott]

Hey, John!

It's good to see you posting again - although I'm sorry all of your post-op issues haven't completely resolved.  I always liked your attitude and believe that is a significant factor for any AN patient dealing with post-op problems as they attempt to regain normalcy.  The slight movement (eyelid fluttering) you've noticed is a good indication of things to come.  Obviously, you've found the necessary patience to help you deal with these problems and I expect that will pay off in the near future.  Incidentally, your 8 cm AN stands as one of the biggest ever recorded on these forums so the fact that you're dealing with post-op complications is hardly shocking, although, like you, I very much wish that wasn't the case. 

I'm also one who doesn't believe we can ever really put our AN experience 'behind us'.  Even with a good surgical outcome, my AN experience (4 years ago this week) is still an important fact of my life.  However, I don't allow the minor impediments it caused to impact my daily existence.  Although being SSD is an undeniable nuisance, that pales in comparison with the travails some AN patients endure.  Partly because I experienced a good surgical/radiation outcome, I try to inform, encourage and support other AN patients via these forums.  I think its the least I can do.  It costs me nothing and allows me to help others with this relatively rare tumor.  If nothing else, my good outcome can be encouraging to those newly diagnosed, facing surgery and/or radiation and worrying about what will happen to them (a very normal concern).  I expect that one fine day you'll be doing something similar - and I look forward to seeing that. 

Jim       

[leapyrtwins]

Thanks for remembering us - and for checking in - Satman.

It's good to hear from you.

Haven't been around myself much lately.

Jan

[satman]

thanks everybody and i look forward to helping out around here if i can.
 

[yardtick]

Satman,

Dr keeps trying different combination of meds.  I have been really suffering since Sunday, at least I think it is because of the unsteady weather system that has hit our area. 

Take care,
Anne Marie