Back in GA after Translab

[cindyj]

Hope all you US folk had a nice Thanksgiving!  We went over to my sister-n-law's house for dinner - I didn't have to do anything but show up, so it was very easy for me...there were about 20 or so people there, however, and it was pretty loud and confusing for me, but I did better than I thought I would.  Was nice to get out and be almost normal!

Took a nice long walk today with Brad - a beautiful day down here - pretty dizzy, but did ok.  My biggest complaint today is a mouth sore that developed a few days ago - think it's from the weird way I have to eat w/ my facial weakness...the eye is still troubling also, but I know this could take weeks or more to resolve itself...being very patient...I think.  Curious - how long does the ear stay numb and stuffed feeling?  I'm guessing quite awhile???

Donnalynn, no worries about food around here.  A friend of mine set up a page on some website where people could sign up to bring me meals.  Think I have food coming til the middle of December!  How great, huh!  I'm very lucky to have so many great friends!

As always, thanks, everyone!

Cindy

[cindyj]

Well, I'm one month post-op today - can't believe a whole month of life has gone by, but if I look at how far I've come in the recovery process, it seems like an incredible distance.  Everything is relative, right?  Compared to 4 weeks ago, I am doing fantastic!  Still have a ways to go, but I'm pleased with where I am today.

I went to the eye doctor yesterday about my eye that was really bothering me.  He recommended Systane drops instead of the Refresh I've been using, gave me a prescription for Restasis, tape to tape my eye shut at night (would like to tape it most of the day actually, but he said to NOT do that), and finally, he plugged my bottom tear duct with a tiny piece of collagen...in hopes that the tears would go to the top tear duct and overflow from there...didn't really make sense to me why that would work, but I was all for trying anything.  This is just a temporary measure til the Restasis takes effect.  Will let you know if these measures help.

Still wonky-headed, but hopeful.  Based on my Wii scores on some of the balance games, my balance is getting better, though - love that slalom ski run!  But, I'm pretty awful at those yoga poses...

Last comment, and I know I'm feeling better to even bring this up...I can't get over how long my belly scare is, yet they obviously didn't take very much fat out of there as there's still a good portion there!  I had assumed that incision would be just an inch or so at the most...Also interesting that I can barely see my head incision any more, but the belly one is very evident.  Not complaining, just noting 

All in all, I feel quite good...and very fortunate.  Thanks (again) to all of you and your support!

Cindy

[wendysig]

Hi Cindy,
Wow!  It sounds like you are doing great!!!  Hope the collagen plus has helped with your eye problem.   I've read that WII is great for balance but have not tried it myself.  Does it affect the wonky head issue in either a positive or negative way?  I've been toying with the idea of getting WII but this is one of the things that has made me heistate since too much visual stilmumation is what sets it off for me.

Wishing you continued good healing,
Wendy

[JerseyGirl2]

Cindy,

Sounds as though you are doing amazingly well at one-month post-surgery!!! I hope your eye and balance issues improve soon -- I would imagine it's just a matter of time, hopefully sooner rather than later.

And you're correct -- if you're even thinking about your abdominal scar you're well on the road to recovery from the more important issues. My scar is about 2 inches long and, at 11 months post-op, still quite noticeable. I didn't bother using any kind of anti-scarring stuff on it since I'm beyond the point of wearing anything that low-cut. It provided some laughs during my annual gynocological exam last spring when my doctor asked, "what's that scar from?" and I replied "my brain surgery!"

Best wishes for a continued speedy recovery, but rest when you need it and expect to hit some plateaus along the way.

Catherine (JerseyGirl2)

[wendysig]

And you're correct -- if you're even thinking about your abdominal scar you're well on the road to recovery from the more important issues. My scar is about 2 inches long and, at 11 months post-op, still quite noticeable. I didn't bother using any kind of anti-scarring stuff on it since I'm beyond the point of wearing anything that low-cut. It provided some laughs during my annual gynocological exam last spring when my doctor asked, "what's that scar from?" and I replied "my brain surgery!"

Catherine,
When I read this, I laughed so hard I cried and almost fell out of my chair!   I told my sister what you said and she laughed till she cried too!!  I can just imagine the look on your doctor's face!!   Thanks for the laugh!

Cindy -- Sorry for the hijack!

Best wishes,
Wendy

[cindyj]

Wendy, I think the Wii Fit is great, but couldn't say whether it might cause you additional wonky problems...for me, it doesn't bother me near as much as going outside and/or in a store does.  Don't know that it's helping anything, but I feel like I am at least doing something physical finally!

Catherine, that is a great story about your scar - I must remember to use that when anyone asks about mine!  Mine is about 4 or 5 inches...yours is 2?  Think the surgeons slipped on me or something

My eye is no better so far.  Part of it may be that I am reading a good bit now - don't think my eye likes it a bit - but I HAD to finish that Tell No One book that Jan recommended. 

I think I am goiing to try to drive up the street in the next day or so - can't stand being captive in my house.  Scary, but it has to be done!

Hope you all have a great week!

Cindy

[FAITH40]

HI CINDY,

I AM TAMMI, NICE TO MEET YOU! I SEE WE ARE NEIGHBORS... I GUESS I AM ABOUT 1 HR AND 15 MIN NORTH OF ATLANTA. I AM GLAD TO HEAR YOU ARE DOING WELL! 

KEEP UP THE GREAT ATTITUDE, THAT IS THE KEY TO A SPEEDY RECOVERY!! HOLLER IF I CAN DO ANYTHING TO HELP!

TAMMI

[cindyj]

That must be it, Donnalynn!  Dr. Friedman and Dr. Schwartz signature scars!

And, hello, Tammi!  Nice to meet you too.  Where are you north of Atl?  Can I assume you are toward the mountains since you had your surgery in TN?  Was your surgeon that famous one I've heard about that is quite up there in age, but still perfoming amazingly well?  I know the ANA is trying to get an Atlanta support group going again - perhaps we can meet at some point if it works out.

Well, I have been driving a bit - rather unnerving, but not too bad.  I try to just go straight and not turn my head left and right too much or back up...I'm careful, I promise! 

I finally got rid of my grey roots last night - please tell me that was ok!  I remember reading some posts about some of you waiting for some length of time to color...I couldn't remember what that length of time was, so I just did it.  Seemed ok since my incision is closed up, right???

Ok, the eye is telling me to get off the computer - talk w/ you later,

Cindy

[JerseyGirl2]

Cindy,

You're fine with your root job! I think most doctors say to wait a month, so per the surgery date in your signature you could have colored several days ago and survived to tell about it. And the head-turning while you're driving will get better with time. One day it will hit you (maybe "hit" isn't a good word to use when discussing driving) that it feels absolutely normal to drive again.

Catherine (JerseyGirl2)

[FAITH40]

HI CINDY 

YES, I WOULD LOVE TO MEET YOU SOMETIME! I CAN'T DRIVE RIGHT NOW, BECAUSE OF  SEIZURES, BUT THAT WILL BE MY XMAS PRESENT BECAUSE I CAN START BACK ON THE 21ST AFTER 6 MONTHS!   I AM SO GLAD TO SEE YOU ARE DOING SO WELL!! ARE YOU STILL ON THE STEROIDS?  I COLORED MY HAIR AT  7 OR 8 WEEKS.. JUST THE LITTLE ROOT TOUCH UP KIT THOUGH. I AM SURE YOU ARE FINE. MY DR. SAID TO KEEP IT AWAY FROM YOUR INCISION.

I LIVE IN RINGGOLD, GA. ABOUT  15  MIN AWAY FROM CHATTANOOGA, TN. I HAD MY SURGERY AT VANDERBILT IN NASHVILLE. DR. THOMPSON AND HAYNES DID THE SURGERY. THEY ARE MID FORTIES I GUESS??? THEY ARE REALLY GOOD AND VERY SWEET!

I DID NOT DRIVE FOR 3 MONTHS AND IT WAS VERY SCARY! I REMEBER THE HARD TIME I HAD TURNING MY HEAD... YOU ARE DOING GREAT! 

I UNDERSTAND THE EYE HURTING WHEN YOU ARE ON THE COMPUTER... I ALWAYS HAD TO TAPE MINE UP OR GLOB IT UP!!    JUST DON'T LET IT GET DRY WHAT EVER YOU DO.. I READ ON HERE ONCE ABOUT A GREAT IDEA AND IT WORKED SO WELL FOR ME. SOMEONE SAID THEY GOT A SWEAT HEAD BAND AND PUT IT AROUND THEIR HEAD AND COVERED THEIR EYES WITH IT WHEN THEY WENT TO BED. IT WORKS SO GOOD!!! BEATS PUTTING ALL THE TAPE ON AND OFF AND PULLING  AT YOUR DELICATE EYE AREA,  CREATING  WRINKLES ! I WISHED I HAD READ ABOUT IT SOONER. JUST MAKE SURE IT IS NOT TOO TIGHT AROUND YOUR HEAD AND ON YOUR INCISION.

I WISH YOU WELL AND A WONDERFUL HOLIDAY SEASON! I JUST CELEBRATED MY 1 YEAR POST OP AND I AM STILL MOVING FORWARD!  HAVE A GREAT DAY!

TAMMI

 ~I AM NOT EXACTLY WHERE I WANT TO BE , BUT I AM NOT WHERE I USE TO BE. THANK GOD! ~

[wcrimi]

Cindy,

Since we are having similar "wonky head" experiences I thought I'd give you an update on my condition and what my surgeon had to say. 

I had my 4-5 week checkup with Dr. Smouha (one of my two surgeons) this week and he said he expects my "wonky head" problem to go away within a few weeks. I'm not sure what he based that on because it seems to be a more persistent problem for many people, but my balance is otherwise pretty good. So maybe that had something to do with it.  It could also be that most people recover fairly quickly and we just have a concentration of people here that didn't (unfortunately). Perhaps those that got over it quickly didn't bother asking questions or complain about it here because they had other issues.   I just hope he is right and that everyone else gets better quickly too.

Besides saying it is not unusual post op, he said the problem is the coordination between my eyes and my remaining balance nerve(s). He didn't call it "wonky head" or anything like that, but he seemed to be very familar with it.  He suggested getting out often, walking, and even riding the bus because the stimulus of a bus ride might even help prepare me to drive. 

As a visual exercise he suggested that I draw the letter "B" on a piece of paper, put it on the wall, and move my head left/right and up/down while remaining focused on the letter.  I'm not sure if any of this will help me. So far I'm not improving much (if at all) in the last few weeks, but I remain hopeful and will follow his instructions.  I have another visit with him in 3 months and one with Dr. Post in about 2 months. 

Keep me/us up to date. 

Wayne

[MKLady]

Cindy,

Here is an idea for the eye that my eye doctor suggested.  He said to cut a square of plastic wrap (the kind you use in the kitchen) big enough to cover the whole eye area and tape to forehead and cheek.  I'd say about 3 1/2" square.  Lubricate your eye really well at night and cover area with plastic wrap.  Tape to forehead if necessary.  Mine would just stick.  It forms a moisture chamber for the eye.  I would feel instant relief.  So much that I would even wear it in the day to keep from drying out.  He said with tape you risk having the eye open and the tape scratching it.  It felt sooo much better!

Tammi (Faith40) - I'm from Rome, GA so we are neighbors as well.

Hope that helps Cindy.  Glad you are feeling better.

Susan

[cindyj]

Thanks for the reassurance about the hair color!  Boy is it nice to have the grey gone!

Tammi and Susan, even if the ANA support group never comes to pass, perhaps we can all get together sometime.  I wouldn't mind heading over toward your way - maybe sometime after the first of the year...bet we could get a few others as well...And thanks for the eye tips.  Think I'll try covering it the next few nights to see what happens.

Wayne, that exercise with a letter on the wall has come up before, must be a good one.  Guess I should try it.  I've been driving a bit each day - went in Wal-Mart today - not as bad as I thought it might be.  Let me know how things continue with you!

Have a good weekend all!

Cindy

[wcrimi]

Cindy,

I did a local drive today also.  It really wasn't bad at all except when I came to an intersection/stop sign and had to look both ways quickly before continuing. The quick movement of my head back and forth "wonked me". LOL   I had to be more careful in those situations. But I didn't feel at risk driving and wasn't putting anyone else at risk either because of my heightened caution.  I certainly don't think I'm ready for highway (or in my case Long Island Expressway/Grand Central Parkway) driving or even driving in very busy neighborhoods in NYC, but I can certainly take quick runs to the supermarket or shopping center using local streets if I have to.  Baby steps. ;-)

Wayne

[FAITH40]

CINDY,

THAT SOUNDS GREAT!  I AM LOOKING FORWARD TO IT!

SUSAN,

YEAH !!!! ANOTHER NEIGHBOR!!!  CAN'T WAIT TO MEET YOU TOO!

YA'LL HAVE A GREAT WEEKEND !

TAMMI