update!

[superrmaren]

well, it has been 7 months.  soooo frustrating!

i haven't said much on the board but i'm reading and keeping up with all the stories. you all give me courage!  thanks so much for slways being there even if you didn't you were! 

i'm still walking with a cane. still going to physical and occupational therapy.  i can see such an improvement in my walking, my balance, my writing.  i evwn went to king of prussia, the largest mall in the country, this weekend!  i did lots of walking, which included lots of rests and a great nights sleep afterwards because i was so tired, but i felt like i accomplished sooooo much!!

i'm stilll not back to work yet -- and the switch to long term from short term disability is a royal pain in the butt. luckily i have a nice dad who is saving me financially while i recover!

my face is still paralyzed which is really hard for me.  one is allowed to discriminate in theatre -- my love and i hope my job some day.  my facial plastic surgeon is going to do a little out-patient face lift for me and says he'll wait 1 to 1 1/2 years before doing any splicing of the nerve or anything.  i wish he'd just do it!  i can see an improvement with my walking, writing, etc. but not my face. it's really discouraging! 

anyone have any opinions on electric stimulation?  some of my therapists/docs are for it, some against it. i read that it could behelpful,  harmful, it has no official studies and literature on it, etc. it is up to me to decide. grrrr - i just know it can hurt if i have the power jacked up too high.  back to square 1 for that decision.  i do have a bio-feedback machine that is showing a minute amount of movement in my facial muscles!!  i just got that unit from my facial physical therapist, and i'm not quite sure how it's able to isolate the muscles we want it to...so, i'm just using it for facial exercises.

my neurosurgeon said i can start driving!!! short distances at first and building it up. my little sister is home this week for spring break, so she will be my driving buddy!

more later!

xox

[nancyann]

Hi there:  I've heard electrical stimulation is a no-no, can cause major synkenisis later on.
              I did acupuncture for a few months, but is got so painful I stopped -
              when my last EMG showed 10-15% nerve generation, was it from the
              acupuncture ?  Would I have gotten that response without it?
              Who knows ?   I do go for Luminex Laser treatments still (that doesn't hurt).
              I can certainly relate to the discouragement with the facial paralysis, I'm just
              glad there are treatments out there that will improve things.
              Keep up the great work in your rehabilitation,  best wishes,  Nancy

[pearchica]

NancyAnn: you continue to amaze me with your strength and tenacity and your ability to share with others. Supermaren- hang in there!  (Do you at least have a cool looking cane? I guess if it were me I would want to make the cane as much of a fashion accessory if I could.. stupid thought really, but then I can tell you are a fashionista if you braved the King of Prussia Mall)! I was in that area on business and my coworker and I went there rather than see the historical sites! (Yes, I am a TRUE American- born to shop and consume ).  Glad your little sister will be home this weekend- she will want the opportunity to help you for once.. take care, keep us updates on your progress.  Annie

[chrissmom]

Maren,
So glad to see you back again..I missed you!  You are a year older than Chris and you certainly were in that amazing club last year.Keep working at therapy.  Chris has a tremendous desire to beat this...he works out on my treadmill.  The Physical and Occupational therapy was so helpful.  He went twice a week for 2 intensive hours.  He's getting there- it's not perfect but he is getting there.  His rehab doctors are specially trained in this type of rehabilitation and I give them so much credit.  Where in PA are you? 

[superrmaren]

chrismom - i am in the harrisburg area. how bout you? best wishes ti chris! tell him he's not alone! i'm thinking of him!

xox

[chrissmom]

We live north of Pittsburgh but have family in Annville, near you.
Hang in there, Maren.  I know what you have been thru and you're going to be fine.  Contact Chris.

[Crazycat]

Hi Superrmaren!

   I was at the King of Prussia Mall this past October while on Vaykay. We stayed over in King of Prussia to check out Valley Forge on the way to Gettysburg. Staying over in Gettysburg again on the way home from Florida next month.
   Good to hear that you're progressing!

    Paul

[ppearl214]

maren,

I send you MASSIVE huggles. I am sorry the journey has been so difficult, but know we are all here for you, standing "beside" you and will walk this journey with you.

(BTW, I look at my cane as a fashion statement... heck, it gets me to front of lines at stores   )

xoxo
Phyl

[TP]

I used the electric stimulation therapy via my physical therapist about 3-4 months after my AN was removed. I didn't see any progress and they gave me a home unit of which I barely used. It is not very comfortable and I have to say that I felt wierd sensations in my face and reason why I stopped using it. Hang in there.    

[Crazycat]

TP,

    I had double vision for years before surgery and continue to have it. After surgery it was the worst ever : I had to wear an eye patch for months. It has gradually eased up over the past year but still bothers me.

   Paul