Introducing Alice Rapunzel - my alter ego - 2 yrs post surgery <g>

[Alice Rapunzel]

I am fine, I really am -- and doing better since I've created my alter ego Alice Rapunzel to tend to all the surgical sequelae. You know the things I mean, dry eye, dizziness (from multiple causes), drippy nervous dog nose that can turn into an excruciating, run to the ER headache -- nasal congestion and obstruction, monster eye (always a favorite), trying to avoid developing phobias of the outdoors, walking, exercise, grocery stores, wind, rain and strong aromas -- telling strangers to please sit on their hands and not gesture -- asking passing neighbors who stopped to admire my flowers to please excuse me while I grab and swing from the porch post -- trying to organize my thoughts and speak in a semi-intelligent fashion at a specialists office after being marched down hall upon endless hall -- having no idea I'd lapsed into "wonky head" and started to walk out of the cardiologists examining room when he said, "Don't you want to change back into your own blouse?" I was wearing their smock and my jeans. Oh yes, and the grandkids especially love my sensitivity to noise and light and motion.

The 7 surgeons did an excellent, incredible 16 hour job -- but their communication and after care really sucked. My PC and various specialists give me the impression I'm some kind of vampire to be warded off with the phrases, "You had such a BIG surgery" (well, my job was to be asleep) -- and my favorite "You're just going to have to learn to live with it, because it was a BIG surgery." Patooye!

I've spent this summer peeling all these symptoms apart like an onion. The facial nerve is So much more involved that just the pirate smile and dry eye. I've followed up with local specialists, but each treat their own piece. I got sufficient information that now the eye and the nose are sort of on a maintenance plan. Unfortunately all of it has me restricted pretty much to a couple of cool, dimly lit rooms in my house - Hence, Rapunzel through the Looking Glass, or Alice Rapunzel, for short. The facial nerve seems to be the proverbial redheaded stepchild. But, I have a plan...

[nancyann]

Hello Claudia (aka Alice Rapunzel !):  your sense of humor has obviously gotten you through ALOT ! !
Your signature says you've had facial paralysis since age 2 ?  
Do you have a gold or platinum eye weight in your upper lid ?
I understand the darkened cool room....   At work I keep the lights off in my office.
I can't imagine having grandkids around; sometimes I work on a child/adolescent unit, when it gets too loud I walk off the unit,
I don't think you can just walk away from your home....
Have you thought of looking into a nerve graft or T3 surgery ?
I (& Kaybo) have both had the T3 done & I feel like a million bucks since having it done.
I have before/after pictures at Facial Issues:  Post Temporalis Tendon Transfer.
You can google Dr. Patrick Byrne (Johns Hopkins) - his site has before/after pictures of others who've also had the T3 surgery.
He only works on the face - quite a surgeon & wonderful human being.

I can see you have the cognitive issues like many of us !   I have to laugh at myself with some of the things
that happen.

Oh,  I'd like to know,  what's your plan ?

Always good thoughts,  Nancy

[epc1970]

Hi Alice/Claudia!
I giggled my way thru your post-not at you for sure-but because I saw so much of myself in it! I'm happy to see that I am not the only one who enjoys a nice cool dark room- I just put up room darkening floor length curtians in my bedroom-my mom helped me put them up and kept saying "but don't you want to open them so the light can come in??". I think my mom thinks I'm either a vampire or crazy . Like Nancy Ann the lights in my office at work are off! Thank you for your homurous look at the things that we AN'ers deal with....it reminded me to keep my sense of humor about some of my day to day frustrations!

Erin

[Alice Rapunzel]

Thanks for not putting me in a pillory! I'd banged this off in the middle of the night, printed a copy and crashed. When I woke up I reread it and was a tad uneasy -- my goodness, I'd put it out there for the whole world to see that I was actually creating my own split personality. Much to my dismay I've discovered over the course of my many years that wicked wit doesn't necessarily go over well unless your speaking to someone that knows you really, really well.

This is my second attempt at a response. I'd had another one complete (with The Plan) to send -- hit spell check -- and then (I swear) the dog ate my homework. So if there are spelling errors now....

I do have a 1.2 gold weight upper lid implant as well as a static sling to complement the facial nerve/greater auricular nerve interposition (jump) graft. My House-Brackman was a 6/6 but still had some nerve function so the decision was made to attempt the grafting.

My grandkids don't live with me -- they live just far enough away that visits need to be planned. But I'll admit my sensitivities to sound/light/motion have severely restricted all my social, religious and recreational activities. I'll do another post on The Plan -- without Spell Check (that darned dog's new name).

By the way, the photo is 4 months pre-diagnosis and many pounds lighter than now. The pirate smile is about the same now.  I'd like to blame the weight gain on the surgery, but alas, must attribute it to overeating and no exercise since the surgery.

[Jim Scott]

Hi, Claudia/Alice Rapunzel ~

I just wanted to welcome you to the forums and salute your valiant spirit and creative coping skills as you attempt to deal with your various post-op issues.  Please don't feel inhibited when you post a message here.  We're all AN patients (or closely related to one) with a lot of empathy for those struggling with the kinds of problems you're dealing with.  Our folks also maintain a good sense of humor.  We understand the frustrations and the need to vent - that's why the forums exist; to offer information and support to AN patients.  I regret that you're an AN patient who 's doctors can claim they treated successfully (the AN was removed) but that had an otherwise not-so-great outcome.  I trust things will improve and like many others, I look forward to reading your 'plan' - and I'm sorry the spell-check feature was instrumental in losing your other post.  Spelling errors are hardly an issue here.  The spell check feature is simply a convenience - and if it isn't convenient for you to use, feel free to ignore it.  No problem.   

Jim   

[nancyann]

Claudia:  glad to hear you had nerve function !  That's something, yes ?  So, how long ago was the nerve graft done ? - you probably know it takes
time for the nerve to grow, so you'll have to be patient,  no way around it.
Continued healing,   Always good thoughts,  Nancy