Enough is enough !

[satman]

1 year and 2 months and i am sick and _________ tired of this crap, when oh when are things going to improve ? the balance thing has gotten better but the eye thing the face,the mouth,etc.. are driving me insane ! If i never see a straw again and a tube of  lacri-lube or food falling out of my mouth it would be ok by me. Honestly, if I had to do it all over again I think I would prefer a bullet in the head. the surgey was the easy part! Sorry everybody,having one of those days and you guys are the only that understand.
good thing I dont work for the post office.[could go postal]

[Omaschwannoma]

I hear you Satman and knowing your past you most certainly are allowed to be fed up!  You deal with more than most since your surgery and no one can begrudge your frustration.  I only hope by your rant that you have released enough steam you won't go postal  .  Our lives post surgery certainly have changed forever and I sometimes allow myself to wonder what ever happened to "me"?  I do not have all the post surgery problems you have and deal with so I do not want to diminish your struggles any, but I share the frustration of having to accept and deal with the new "me".  I don't want to diminish your problems any, understand this, as you deal with more than most, but just the other evening I was thinking about how much my life has changed physically.  My world is not the same and never will be due to my imbalance and the "wonkyhead" feelings do a good job in keeping me "disconnected".  My balance nerve has been severed and therefore "I" have been forever severed.  There's a new me in there and some days it's difficult to embrace and accept.  So, vent away and know I share your frustration, even though I don't share all the problems you face daily, I can understand.  Most people around us see us as functioning quite well to the point they forget we have difficulties because they are invisible/internal.  I'm sure those around you see the progress you have made and they feel very positive for you, not understanding you still struggle, daily to keep on going forward.  They don't see the amount of effort you put forth, because most of your effort isn't "felt" or seen by them.  They cannot possibly understand how you actually "feel" and how much effort you exert in doing the mundane, everyday tasks.  Before my most recent surgery I was physically going down hill, no one saw a problem other than my having to use a cane to walk.  They couldn't understand just how awful I was feeling.  My brain/balance system was fighting itself and I never had a moments peace whenever I walked.  It was physically exhausting and before I was diagnosed with residual balance nerves left behind from 1st surgery I felt very guilty about not feeling greatful that at least I was alive.  I began to listen and take note when people would talk about how a friend of theirs commited suicide.  I couldn't believe I started to have those conversations with myself, but I didn't want to live the rest of my life the way I was feeling.  Emotionally I had hit an all time low.  I went from doctor to doctor to get someone to help me.  It wasn't until I went back to my original surgeon who performed my AN surgery that I was properly diagnosed (I live 5 hours away from where my surgery was done so sought doctors in my home town--big mistake!).  After my second surgery I am doing much better, my brain/balance system isn't fighting itself, but I do have those days when I am still reminded, I am not the same woman I used to be.  I am sorry you are having "one of those days" and hope you have blown off enough steam you won't explode--that would be messy.   

[TP]

Things will get better but slowly. My balance improved immediately. My face over time looks better but does ache in the evening and I am tired of not having a normal smile. I find when I am tired or have worked long hours my face twitches more and I experience more issues, i.e. eye dryness, coughing and yes sometimes food falling out or not fitting well in my mouth. I think the hardest thing to do is to rest more than you use too. Hang in there!!

[Joef]

satman ... do you have an eye weight .. had than done a year after surgery ... and what a difference ! I can even skip days with drops... (but still dont leave them at home when I go out....)

[Pembo]

satman, I'm 4 years out this week and I remember feeling just how you are! I'm sure there are posts somewhere in the archives by me that sound JUST like yours. Are you seeing an opthamologist for your eye? I had a punctual plug inserted in my tear duct. (It sounds painful but it was simple). That and a prescrip of Restasis and I said goodbye to the Lacrilube for good! I was a heavy lube user, none of the drops were enough but between the plug and Restasis I've been lube free!!!!

I can drink without a straw but I usually don't. I saw a facial therapist in Pittsburgh who said he has seen patients who have sensation return up to 15 years after trauma! I can tell you that year 2 - 3 saw the most recovery with sensation and it still gets better all the time. I can actually FEEL food in my mouth on that side.

Yes the surgery was the easy part! But I am here to say recovery takes TIME! I hate the word patience but that's all we can do, wait!!!! Stay strong my friend and vent away. We all know exactly how you feel.

Barb


 

[satman]

thanks everybody,came to my senses and realized there's nothing to be gained at the particular moment,must wait it out.
i do have an eye weight and using lube has decreased , but not to my satisfaction i guess.
the road just seems to get longer and longer, even though, there was a time i could'nt walk ,it took 5-6 months to get around without a walker.I just have to come to the realization that only time will heal and i have never been a patient person.I guess I'm just sick of the person I have become,but this to shall pass,[I guess].It's tough staying positive day in and day ouy,but I'm trying. I'm glad you guys are here,I mean that in the best way possible.

[yardtick]

Satman,

I too haven't been thru everything you have.  I use to be the life of the party at home, work and socially.  My personality has changed so much because of constant pain.  I have a facial neuroma that was debulked almost 2yrs ago and one day I am going to need a nerve graft.  Now I have a scar neuroma and my Dr feels that is the real issue at the moment.  I'm real tender today because yesterday my Dr gave me 4 injections of a nerve block in the scar neuroma.  Sometimes I wish I could go back to the old me, but I know that isn't going to happen.  For whatever reason  this is my lot in life.

I had a huge reality check in March.  Two days before my 3rd son's 18th birthday one of his dearest friends paused away from cancer.  Amanda was a real fighter, her first battle with cancer was at 15 months of age.  Her second battle started at 15 yrs of age and lasted 2 nasty yrs.  Her favourite saying was "keep your chin up butter cup".  The hardest moment I've had as a parent was holding Anthony in my arms at 2:00am as he cried himself to sleep.  He was there when Amanda past, its only been a few months and he still has moments when he sobs in my arms like a baby. 

I'm not making light of your battle with your recovery from AN, but you are here to celebrate this June day.  Where I live it is sunny finally and very hot and humid.  My grass is green and my flowers are blooming bright beautiful colours and I have my life.  I have a wonderful husband (most days ) and four healthy sons.  I am truly blessed.  Satman, you are an amazing person, and I thank God you do not work for the post office!!!  Rant and rave here on this wonderful forum!

Anne Marie

[lori67]

Satman,

If I had a dollar for every time I've said the brain surgery was the easy part....I'd be rich.  Who would have thought that was the easy part - but dealing with everything that needs to be fixed after the surgery gets really frustrating at times.

I share your dislike of assorted eye drops and gels scattered all over my house, straw stashes in every purse, diaper bag, glove compartment, etc.... It gets to be a lot somedays.  But most days I can tell myself that I can deal with this and remind myself of the people in this world that have it much worse than I do.  I remind myself that I'm thankful this happened to me instead of one of my kids, because I'm not sure I would be able to watch one of them struggle with these things if I couldn't do anything to help them.  That being said, I still think it's perfectly okay to allow a day every so often to feel sorry for ourselves and be really mad (as long as we don't apply for a job at the post office that same day...).  I think you need to get it out of your system every now and then.  That's why I'm grateful for this forum - I know I can vent when I need to and someone will always be there to listen and to make me feel better.

You may get sick of the person you've become, but we kinda like you!   
Lori

[satman]

Wow yardtick that story really does put things in perspective,thanks to each and everyone of you for your support,thats just what I needed.
I'm through feeling sorry for myself,today anyway. Every now and then this AN thing just gets overwhelming and gets to me just as I am sure it gets to all of you also,thanks for being there for me.
Bout time for me to take my straw and find the nearest margarita,not to drown my sorrows but to celebrate life.

[yardtick]

Now your talking   Let's time this right so we can all have one together to celebrate life.....cheers!!!

[satman]

ok yardtick set a time,i'll most def have one with you,i will be starting early as i get off work at 1:00 central, but i can hang.

[nancyann]

Hi John:  Boy do I know how you are feeling.  Remember too, you have other options - you know I was afraid to have a nerve graft, & this past November I had the Temporalis Tendon Transfer (T3 - my before/after pics are under Facial Issues, Post Temp. Tend. Trans.) - I feel so much more like myself. Even though I'll never have movement like the nerve graft provides,  at least my droop is gone, I can drink out of a cup.
The lubricant use morning noon & night & using an eyebubble every night is a necessary nuisance ( & I just learned they moved my eyeweight implant surg. from 6/12 to 7/7 , UGH ! !), but whatayagonnado ?

Okay John - treat yourself to something you like today, I know I will.

Always good thoughts,  Nancy

[yardtick]

Okay, but let's see who else wants to join us......it can be any type of beverage you like!!!

[Jeff]

Satman,

I don't have all of the answers, but I can certainly relate. I too spent months (and many hours at PT) to learn to walk again. And as I have gone through things, my perspective certainly has shifted. First, being able to take care of myself and getting around was my focus.  Then, after I got better, I began to deal with the other frustrations: deafness and facial issues.

The facial issues are certainly irritating. Having left my eye drops at home has become a catastrophe.I don't know how many times I have said that "i wish I had purchased stock in eye drop companies." 

And yes, progress is slow. My facial nerve was severed, so I have no progress there, but I continue to improve in mobility. I trust your progress will continue, slow as it might be. You will improve because you don't like how things are currently. This has been a driving force in my personal recovery.

And maybe things will get better, and maybe they won't, but we just try to make the best of our situations. I am sorry for your frustrations and wish you the best.

Hang in there,

Jeff

[satman]

Hi Nancy,i'm a little confused on the t3 thing,august of last year i had the 7-12 nerve jump to my tongue and i use to get what i call zappers in my face,now it seems that they [zappers] have slowed down,not sure what thats about.sometimes my eye will have a weird sensation,it feels like a fly is buzzing right around my eye and then it's gone.my dr said after the nerve jump it could take up to a year for animation to return,so i'm curious, should i just wait it out or check into the t3 ?