ANA Discussion Forum
AN Community => AN Community => Topic started by: Kaybo on May 12, 2008, 09:40:21 pm
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Here is the latest & greatest about my face. I am still getting it packed twice a day by Home Health Care -- they are having a LOT of trouble packing it. Apparently, this is the narrowest and longest "wound " they have ever had to pack (5 different nurses ALL say that) -- you know me, I have to be different than anything normal or easy!! Dave was so upset that he couldn't pack it -- he said he felt like a failure b/c he couldn't even take care of his wife!! So sad, but then they couldn't do it either! I go to the Infectious Disease doctor tomorrow...he is not that nice. I think he is one of those that feels kind of "shunned" b/c I went somewhere else to have the surgery...HELLO...they don't do it here. My goodness, they don't do it ANYWHERE else! Anyway, he wanted me still on IV's, but my white blood cell count was low last week so I switched to 500mg of Levaquin orally. Hopefully I will get the PICC line out tomorrow (he wanted to leave that) -- the tape is REALLY starting to bother me after almost 4 weeks!! I go back to Houston on the 23rd - we are all going since it is Memorial Day weekend and spending time with Dave's family. If the doctor is NOT please with it, I will stay there for the long haul until it heals!!!! School will almost be out by then anyway so it won't be as big of a deal. My MIL (Houston) and SIL (Pasadena, CA) are here this week -- it is so great having them. My FIL actually came yesterday to surprise us for Mother's Day and I had a nephew here too that flew out today -- there are 5 kids counting mine! Needless to say, it is exciting around here!
Better run!
K
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HUGS!
Hang in there we are rooting for you! Thanks for keeping us posted.
Daisy Head Mazy
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K -
thanks for the update. I'm glad you found time to post this - you must have your hands full with all your house guests :)
Doctors with attitudes - haven't encountered any myself recently but - I just hate that :(
I hope tomorrow's appointment goes well and that you will be able to have your PICC line removed. You have been through so much lately, surely it's just a matter of time before things get better. One day soon, you'll get to say good bye to Home Health Care for good. You, Dave & the girlies will have to have one huge celebration.
Don't think of yourself as different than anything normal or easy - think of yourself as "special". It'll make you feel better - plus you are special.
Jan
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K -
Sounds like you're doing better. Glad to hear that. And it sounds like you have a houseful! Maybe the rest of us should come visit too - what's a few more??? ;D
Good luck with your trip to the dr. I'll be keeping my fingers crossed for you!
Lori
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I'm PICC-less!!! WHOPEEE! It already feels better - however, I didn't realize how LONG it was...YEEEEEEEH! The doctor was a bit nicer today too! Must run, just wanted to share the good news...baby steps...
K ;D
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Hooray for you, Kay!!!! I am SO happy for you! Now, remember to follow your own advice to me - to take it easy! You are a warrior!
Debbi - in awe of Kay
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Yay for Kay!
Kay??? Take it easy???? :D Yeah, that'll happen.
Congrats!
Lori
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*runs up to Kay... gives her BIG MASSIVE HUGGLE!!!!!!!!!!!!!!!!!!!!! runs back out to finish sales forecast*
xooxoxox
Phyl
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K -
I'm thrilled for you!!! You deserve great news like this.
Jan
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Hang in there K and please know that we are sending out good vibes and healing thoughts. Hope you get the swash back in ur buckle soon!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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K;
Thanks so much for the update. I'm pleased for you that the PICC line is now out and you're coming along. Keep up the good work!
Jim
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Hey K
That is great. Finally -- progress! Keep it going -- even if it is babysteps.
David
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WHOOHOOOOOOO ! ! ! Great news K ! !
Always good thoughts, Nancy
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Y'all are such good encouragers! Thanks!! ;D
More good news: they called the Dr's office in Houston and since my face seems to be healing so well, we are trying only packing it once a day! But the MAIN thing is.........I FINALLY got to get my hair done today!! YIPEE! I know that Debbi will understand the importance of this!!! I will post pictures soon (probably on my blog)!
K
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K -
I think all of the women here can understand how important the hair is!
You know you're getting better when you can get your hair done! And that certainly makes you FEEL better!
Lori
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K -
the news just keeps getting better and better!
Yea!!!! ;D
Jan
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Hello All!
I just put some pictures up on my blog of my face before & today...
K
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K: The results are amazing ! ! Only 7 weeks out - it will continue to improve. 'YOU LOOK MARVELOUS ! ! !'
I know you didn't have the 'droop' like I did, but you have the 'Mona Lisa' smile already.
I hope to see you in July. I'll be having my platinum eye weight put in 6/12, between that & my PCP
continuing to regulate my thyroid (I am sooo tired all the time), I'm going to try to be at JH to meet you
with bells on ! !
Always good thoughts, Nancy
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K, it looks great! I was not expecting it to look that good, given the ordeal you have been describing lately. It is so much closer to symmetry now, the remaining difference just looks like "character." :)
On the blog you said something about weight, does that mean the eye weight? At our last local ANA meeting, Dr. Eric Steele of OHSU described a procedure where they place the eye weight further back on the lid. It looked good in the slides he had, although I don't know a lot about the subject.
Can't wait to see the bandage come off...
Steve
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Steve~
Yes, the eye weight. I'm glad you said that -- I think it should maybe be positioned farther back. The platinum one is supposed to be less noticable than the other, but I really think it MORE right now!
K
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Lovely picture, K :)
Jan
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WOW!
I see a smile- on BOTH sides. Terrific!
Thanks for sharing this with us.
Daisy Head Mazy :)
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Hey Daisy,
Do you remember any more about Dr. Steele's eye weight placement from the meeting? Such as the name of the other doctor he works with? All I remember is the comparison between the usual placement (near the edge) and the one they do at OHSU, far enough back that you don't really see it when the eye is open.
K sounds interested. :)
Steve
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Steve~
I would be VERY interested - I thought that the platinum was supposed to be LESS noticeable but I kind of think my gold one was less...again, that is the least of my worried right now!!! LOL!! I don't think the Dr. in Baltimore is going to LOVE it either - we'll see in July when I go to see him!
K
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Steve
This is the link to Dr. Steele
http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=13700
Sorry I did not catch the name of his partner.
I too like the idea of the weight further back. I am still wearing the “blinkeze� tape on weight (yes folks I had a regression do to the synkinesis however I do not always need to wear it) and I find it is better to stick my weight on further up the lid rather than close to the lashes. At night I move it closer to the lashes- but hey at night we can all put in eye goop. :-\ It is the day time comfort we need.
I think that “if� I need to have the permanent one put in, as Kaybo has, I would want a surgeon who would do it as Dr. Steel advocates. “Further up the lid – away from the lashes.� I am still waiting to see how funky my facial movements are going to progress as this blinking action is intermittent (like a windshield wiper control or out-of-control). If I stick on my weight too close the lashes I cannot wear mascara (not that you wear mascara Steve :D ;D ;) LOL) as it scratches the eye- but further back I am ok.
It is all a matter of physics. If you put it further back however you may need a slightly heavier weight.
All a weighting game (ar ar “waiting: game… get it…. Snort snort… ;) :D ;D ::))
Cheers,
Daisy Head Mazy
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I'm pretty sure that Dr. Roger Dailey is the other doctor.
He has an article called "Gold weight implantation: a better way?" in Ophthalmic and Plastic Reconstructive Surgery, Jan 2005.
http://www.ncbi.nlm.nih.gov/pubmed/15167727
From the abstract: "We suggest that unwrapped intraorbital gold weight implantation provides adequate function, better cosmetic appearance, and lower morbidity than conventional implantation with wrapped or unwrapped pretarsal gold weights."
I know that whenever I have the choice between intraorbital and pretarsal, I always go for intraorbital. :D
This is the Oculoplastics/Reconstructive page for Casey Eye Institute, Oregon Health Sciences University:
http://www.ohsu.edu/health/clinics-and-services/clinic.cfm?id=11534
Best wishes to any who may need this,
Steve
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K -
I just had a chance to check your blog and read your last entry. It sounds like you are healing very nicely ;D
Congratulations! Keep up the good work!
Jan
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Jan~
Thanks! Looks like I will be wearing the white patch for a while longer, but I have definitely endured worse things...it makes for a good conversation starter!!
K
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Hi Kay-
I just got to read your blog finally - the pictures look AMAZING!!! I can't believe the difference already! Wow!
Debbi - using Kay as role model for a beatiful smile...
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K:
I regret not having viewed your before-and-after photos sooner. They are awesome - and inspirational.
I pray for your continued success in this journey and that whatever problems that might occur will be quickly resolved as you reclaim facial normalcy.
Well done! :)
Jim
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OK - I'm not one for just tooting my own horn, but I am just giddy and want to share! I got good news at the Dr. yesterday - NO ANTIBIOTICS (1st time in 6 weeks), NO PACKING & NO MORE BIG, WHITE BANDAGES!!!! There are pictures on my blog!! ;D
K (smiling in Texas!!)
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WOW! You look great Kay! Congratulations. I'm very happy for you.
David
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Kay,
I just read through your blog, and am in awe of what a long haul you have endured, with courage and humor. Congratulations on your clean bill of health, and you look FANTASTIC! :o (Wow, the results with T3 surgery are FAST! It was at least 6 months after my 7-12 anastomosis before I started to see results...)
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K -
I just checked out your blog. Your pictures just keep getting better and better ;D No more antibiotics and graduating from the big white bandage to the small beige one - such huge progress!
Don't ever hesitate to "toot your own horn" - we love sharing in your successes.
BTW, it's great that your daughter is going to donate her hair - a very generous thing to do :)
Jan
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cmp~
I did the 12/7 also and didn't have any movement for 8-9 months!!
K
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The medical report on no more antibiotics is great news, and the pictures are even better! Toot, toot!
I'm also glad to see David posting again, you've been missing for a week or so I think.
So Kay, do you have to change the name of your blog, now that their hair is straight? :)
Steve
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I missed David too - and was very glad to see him posting again ;D
K -
I vote that the girlies keep their curly hair - and I forgot to say that the picture of you with them was very sweet :)
Jan
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Kaybo, You look so super! I am very happy for you and well understand that living with facial paralysis is not easy. I had the nerve graft done when had the facial neuroma and it took a long time for it to improve. You did well with the wound care and am glad that it is now as good as it is. Thank heavens that the antibiotics are now done with the PICC.
Have a good summer with your beautiful girls. Cheryl R
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Kaybo,
You are an inspiration to us AN’ers … and to us fellow moms to.
Thanks for sharing. The music on the website is great! SMILE by Nat Kinig Cole is SO appropriate.
Keep smiling MAMA!
Daisy Head Mazy
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Thanks Steve and Jan
I won't be such a stranger. Just a busy week taking on the IRS and Social Security. *bang bang bang* That's me knocking my head against the wall. I shouldn't do that, it's loosening up things in my head again.
BTW -- for those of you who are interested -- I worked frequently on the Universal backlot that burned down. There are tons of famous scenes -- including a scene from Austin Powers on Carnaby Street (the Boston Street transformed). And for those of you Desperate Housewives fans, Wisteria Lane is just a few blocks up the hill from the fire.. There were a lot of great memories there.
David
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Hey Everyone!
I don't know if anyone is interested but I thought that I would put one update on here so if anyone wanted, they could read about my recent check-up with Dr. Byrne about my T3 surgery. I actually went on the 16th, but have had computer issues since then and am just now having internet service again! I forgot my camera but I used my friends the whole trip. I have some great pictures, and even one with Dr. Byrne, but I have to figure out how to get them from Shutterfly to my computer so I can load them on my blog (or here, if I can execute Jan's instructions!).
Basically, the appointment went as I had expected. He was VERY pleased with my face and not so pleased with the eye weight. He was especially pleased with the healing of my face since I had had SO much trouble (& been thru so much) with the whole healing process. He said that we probably LOST a couple of mm's because we had to go back in & open it up again and offered to "tighten it up" but I think I have done enough for now. The eye weight that he put in was a platinum chain and supposed to be less noticable than the gold. I figured that he would think that it was not positioned correctly and I was right. It seems that it has "slipped" and is too close to my nose (for lack of another way to say it). He checked his schedule when he found out that I would be there the next day, but couldn't work me in (he said his office would kill him, but he checked anyway and I said that was OK b/c Dave would have been very upset if I would've had surgery - no matter how small - & he not be there!) I will follow up with the Dr. here that put in the gold one and then did the follow up this time. ALSO, I found out that I have some synkinesis. Now I know that most people are so upset when that happens, but to tell you the truth I AM OVERJOYED about it!!! This surgery had NOTHING to do with the nerves and I have had NO nerve movement in 12 years! It is very small (and I do need some exercises from y'all so it won't get worse) but it is very exciting for me at this point! When my eye blinks on the right side, the corner of my mouth turns up a little - of course, you only notice it when I am not talking - & you're really looking - and since I am talkiing most of the time... Overall, I am VERY pleased with the results (I don't think I would have appreciated it as much if I hadn't to go thru everything I did!) and don't want to go in again anytime soon. The Dr. in Houston thought w/ 100% that we would have to do some repair work where they reopened it, but you can't even see it! Dr.Byrne agreed that it looked great as is - another answer to prayers! I will probably go back to see Dr. Byrne during the course of my life to have it "tightened up" - or another Dr. as this procedure gets more popular, but nothing for a few years. I still just LOVE him - he even gave me a big ole hug when he was leaving (& we discussed baby names for the upcoming birth of his 1st son)!!
Again, I will try to put up pictures later!
Thanks for all the support during all of this!
K
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Kay-
I'm so excited for you!! You're right, most of us would be bummed with synkinesis, but if you haven't had ANY movement in all these years, then some kind of movement just has to be good, doesn't it??
Am also so glad to hear that the appointment went well - I've been wondering.
Keep twitching, girlfriend!
Deb
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K:
Thanks for the informative update. Your satisfactory visit with Dr. Byrne was is encouraging, too. It's great to have such a good relationship with your doctor. That you view synkinesis as a very positive development is simply relative to your total lack of movement for a dozen years. I'm glad for you, too and I pray you'll have continued success in the months ahead.
Jim
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Kay - that is great news! I knew you were going for your follow up and was hoping to hear an update soon!
Yay for synkinesis (in your case!).
I can't wait to see the pictures!
Welcome back!
Lori
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Thanks for the update! Things are looking good for you finally after all you've been through! I'm glad the appointment went well; that's great news!
Brian
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K -
of course we are interested! and just for the record, we missed you! Welcome back ;D
Sounds like, with the exception of the eye weight, things are going very well. I'm definitely in line to see the pictures when you post them; can't wait!
BTW, what did you and Dr. Byrne decide to name the baby? Do the rest of us have any input on this? :D
Jan
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I put pictures on my blog if anyone wants to look...
K
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Yea, K !!!
I'm going to check out the blog after I'm done here.
Will give my "feedback" on the pictures later. I'm sure they are beautiful though ;D
Jan
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K -
I already posted on your blog, but wanted to let everyone know how great you look! Looks and sounds like you and the girlie had a good time in Baltimore!
Lori
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Wow, Kaybo! VERY nice pictures ;D
Oh, yeah, Dr. Bryne looks good too. Yes, I know, I know, he's married. Most of the good ones are :'(
Jan - or should that be Naj ?
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Hi Kay: your pics are great ! ! I'm so happy for you (& me). It was nice to see Dr. Byrne in a picture too !
Always good thoughts, Nancy
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All I can say is WOW! Just visited your blog and went through the pics and stories. I'm very impressed by what Dr. Byrne has done for you and what he did for Nancy. I am humbled by what you have been through and so happy it looks as though it's all down hill from here! Beautiful Kay!
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K -
Sorry I'm so late coming to this thread but better late than never I hope. It sounds like you have great news all around and I am so happy for you. Your pics look wonderful and I can see why you are so happy! Glad to hear your trip to Baltimore was such a success.
Wendy