7 months post

[lori78]

Hi everyone!
Happy Friday!

So, I am back working full time and about to start grad school part time again, and need some reassurance!  What better place to go than here?      While I still have no feeling on my left side, I'm starting to get 'itchy' on that side.  Good, I hear.  I am also feeling 'zaps' and twinges here and there... anyone?  I have no tears being created in my left... any idea when that will come back?  I am blind as a bat and hate glasses.  Lastly, I live in Richmond, sometimes with no ac, and it's HOT.  Like 110 Heat Index Hot.  I usually manage work, then come home exhausted.  I feel guilty because everyone seems to think I am back 'to normal' but I am not!  I am popping ATivan daily and still processing this mess of three surgeries, ICU psychosis (anyone?  SCARY!) and am only 29.  sigh... just need an emotional 'checkup' from you all.  My doc thinks I'm doing great, but I don't feel that yet.  My next MRI post GK is in Oct.  Thanks!  Cheers, Lori

[nancyann]

Hey Lori, Happy Friday to you too!!(I thought it'd never get here)...   my but you've been through a few rollercoasters there with all that surgery - you must have a very strong constitution !!   I think it's great to hear you're getting the 'zaps' & twinges - I haven't felt anything like that yet - I seem to remember it does signal your facial nerve waking up - EXCELLENT!!   As far as the tears - those I have, though they're useless because my eyelids won't move so they just run down my face.  I can't remember when I started having them - seems maybe just the last few months & I'm a little over 13 months out.   I'm sure you know to keep your eye WELL LUBRICATED - I haven't had any corneal problems & I think it's because I've been overloading with the lubricant from the get-go because of the burning when I didn't.   I can't believe that besides working full time you're going to be going back to school - but if '78 is the year you were born, maybe your young age is helping with the energy - something I'm still lacking (working F/T is enough for me).   Please DO NOT feel guilty about anything - this Sunday there's a party for a co-worker & I declined because of the noise/# of people, & I spend the weekend trying to recuperate from all the noise & work all week.  I DON'T feel guilty when I turn down anything anymore - I've got to look out for myself, no one else will.  Do you mind my asking how come you're on Ativan?  I take a Xanax 0.25 mg once in awhile when I'm having trouble sleeping, but nothing routine.   Best wishes on your followup MRI - I was avoiding my 1 year MRI (don't want to know), but yesterday called my PCP for an authorization.
Always good thoughts,  Nancy
ps:  actually, you should be going to your opthamologist routinely so he/she can keep a check on your cornea - ask the doc re: drops like Restasis, or eye plugs, Pattibobatti just got a new contact lens that keeps the eye moist.  Good luck !!

[pattibobatti]

iHi there!

Zaps and twinges are a very good indicator that you may start to get some movement!  I was over 8 months post op and still no movement. I did have the nerves making alot of zaps and zings and then one day I looked in the mirror and saw the slightest movement at the side of my mouth.  That was a good day!!!!

Now, 18 months post op and I have pretty much a full smile!  The dry eye problems are a pain but I did just start trying a new kind of contact that locks in moisture to the cornea. 

I completely understand the feelings that you get from hearing how everyone thinks you are back to normal.  It can be a very lonely feeling. 

[lori78]

Thank you both for replying, it helped.

I will look into those contacts, that's awesome!

I am actually switching back to xanax, I was taking Ativan because it is milder, takes longer to take effect (hits you less hard than xanax for me anyway) and lasts longer, I think.  I wasn't sleeping, and took xanax but would wake 4 hrs later when it wore off.  Ativan has me sleeping a full night but now I can't get out of bed some mornings because I'm stilll tired.  So I think, for me, xanax was better... but you may want to try ativan!!!  Have a good one!

[lori78]

Oh, and yes, I'm only 29!!

[Jeanlea]

Lori,

If I read your post correctly you mentioned that you had no feeling along with no movement.  You would have to be very careful with a contact then because you be able to feel if anything is irritating your cornea.  I also have no feeling or movement.  I'm putting in ointment every three hours.  I have adapted to seeing with one for my the most part.  My eye only seems to tear when I run.

Jean

[lori78]

No, I must have written that wrong.

I have no feeling but I do have movement.  I can blink my eye, smile, look the same basically, but just don't create tears or feel anytthing on my left side, nor can I hear.  I'll still likely hold out on contacts though until I get some tears back.  I do religiously use drops during the day and the gel at nite.   

[neal r. lyons]

Hi Lori!  I think you should take it as a plus that others are viewing you as your normal self.  I certainly can understand your feelings knowing that you're not.  But what you are experiencing definitely is indicative of improvement!

I'm 2 months post-op, tried a band-aid type contact for a few weeks right after surgery, but it picked up too much particulate matter so i decided to continue with the eye drops every few hours.  I have had no movement yet on AN side, i.e. no tearing,blinking, etc. but the other posts are very encouraging to me.

I have a question:  Was your facial movement post surgery absent after each of your surgeries or not?

Thanks Lori and best wishes to you.  Neal

[lori78]

I have always had facial  movement.  Just decreased sensation on my left side, and now the numbness.  My eyes still blink, etc.