ANA Discussion Forum
Post-Treatment => Eye Issues => Topic started by: Doc on October 29, 2009, 01:51:53 pm
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I just got a call from my Eye Surgeon's Office, they have ordered an external weight and have scheduled me to come in to take it for a "test blink" next Wednesday afternoon. I've been very anxious about the whole eye deal ever since the gold implant procedure failed so miserably leaving me physically scarred. I've read everything I could find on the subject and the only real cautionary note I found repeated at all, was the possibility of irritation developing from adhesive on the eyelid. It couldn't be any worse than what I've experienced for the pasts 12 weeks, taping my eye shut 24/7.
Does anyone have any personal experience with external weights they'd could share...good, bad or otherwise?!?
Thanks!
;)
Doc
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Hi Doc!
I've been using the external weights - 1.4 gram then 1 gram, and have found them very helpful. The only problem I've had is the weight pulling (or pushing?) the skin on my eyelid down into my lash line. I tended to take it off several times a day and this may have stretched my eyelid skin. I do have sensitive skin but the adhesive never bothered me.
My eye now closes well and I can blink some so I do not need the weight anymore. This is a good thing since I've lost it once again!
Good luck with your Blinkeze!
Cyndi
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Hey, Doc - So sorry to read about everything you've had to go through! I've been extremely busy these last two weeks and haven't even opened the forum.
I have an external weight and have no major complaints to speak of. As I posted a couple of weeks ago, it's apparently not closing my eye enough and I'm currently scheduled for a platinum weight implant - I was having second thoughts nagging me, and after reading of your experience, I really do! I had a tear duct plug for a while, but it came out somehow. I think that ,with the external weight, kept me from the problems I'm having now (wind, drafty stores, etc. irritating and scarring my cornea).
Anyway, the external weight might bring some puzzled glances - most people think it's a tiny band-aid - but I was willing to go this route to avoid anymore surgery! Good luck with it. Hope you're as happy with it as I have been.
Cheryl C
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Hi Ladies and thanks for the input! Gosh Cheryl, please be sure and do what's right for you. My experience according to the Doctor was rare, but it happens. I wish I'd known or had been given the option to go the external route first. If I had found this forum before this all started things may have been different, I would have known the right questions to ask...oh well, to late for that.
I somehow maintained a little bit of the ability to close my eye the first few days after the weight was removed. That all went away within a few days. What worries me now is I still have a small scab left from where the weight poke through so that might make it difficult to wear a stick-on external weight. Worst case, they may delay giving me the weight until I've fully healed.
All I want obviously is to keep the eye closed. Having it exposed to the air is very irritating and increased the chances I'll scratch the cornea, which I've managed to avoid so far. Cherly, that must hurt when you scratch your eye, I cringe just thinking about that. As for appearance, I'm really not worried about how it looks on me, I've spent every waking hour since surgery wearing stick on eye patches...unintentionally scaring small children all over. My skin isn't much a concern either; I'm a crusty old guy and did give that much though anyway.
I hope your procedure and the weeks that follow good well for your Cheryl, and remember, ice or bags of frozen pea's should be your best friend for the first few days after the procedure. Cyndi, I hope I have the same positive results you have from the weight, hopefully I won't loose the darn thing before its done the job.
Thanks again and take care!
;)
Doc
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I tell you what, its time for me to find a new Eye Doctor. For the second time now, they failed to place an order with their supplier, this time for my external weight. Once again my treatment is being delayed, this time until early December because of a clerical error. That's another full month I have to go with a taped and patched eye. They didn't even give me a courtesy call, they let me make the drive down their to tell me they screwed up, again! Some of these medical offices I've had deal with have no respect for their patients. So, I'm looking for another Eye Care professional to work with.
Argh!
Doc
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Doc, did the eye doctor tell you what weight he was going to order? I have a 1.6 gram doing nothing but gathering dust here. If that's the right weight, PM me your mailing address and I will send it to you.
Sara
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Doc, did the eye doctor tell you what weight he was going to order? I have a 1.6 gram doing nothing but gathering dust here. If that's the right weight, PM me your mailing address and I will send it to you.
Sara
Hi Sara,
My Implant was a 1.8?!? He didn't say what the external would be?!? I'll inquire.
Thanks Sara, very kind of you!
Doc
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Hey Doc.
I had my physician fax the "prescription" directly to the company - MedDev makes the Blinkeze eyelid weights. MedDev mailed me the Blinkeze within a week. My second weight, 1 gram, was not in stock so it took about 10 days to receive. Here is the website link..http://www.meddev-corp.com/.
Maybe the nurse in your physician's office could facilitate the process for you.
Good Luck,
Cyndi
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Wow, very cool...thanks Cyndi, I'll give that a try!
Doc
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Cyndi,
Spoke to my Doctor, he's faxing the prescription to MedDev...should have the 1.8 Gram Blinkeze Weight Kit in days now instead of weeks...Thank you so very much Cyndi! This network of AN People / Patients is fantastic!
;)
Doc
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I tell you what, its time for me to find a new Eye Doctor. For the second time now, they failed to place an order with their supplier, this time for my external weight. Once again my treatment is being delayed, this time until early December because of a clerical error. That's another full month I have to go with a taped and patched eye. They didn't even give me a courtesy call, they let me make the drive down their to tell me they screwed up, again! Some of these medical offices I've had deal with have no respect for their patients. So, I'm looking for another Eye Care professional to work with.
Doc ~
I was dismayed to learn of this new reason for delay in your quest to obtain a much-needed external eye weight, caused by the doctor's office staff incompetence. Although I didn't require an eye weight, I had a similar maddening experience with my local ophthalmologist's office. I was there last fall for a follow-up visit to my cataract surgery (which was uneventful) and the good doctor let me sit and wait for almost a half-hour, alone, in an examination room, then didn't bother to offer even a perfunctory ("sorry about the wait") apology, as if my time and the inconvenience the waiting caused me were totally irrelevant. Of course, I'll never go to that doctor again, even though his office keeps sending me 'reminders' about the need to have an annual eye examination. Perhaps, but not with that arrogant doctor.
I believe that just as we have to be pro-active with our health needs we definitely have to be discriminating as to what doctor we'll employ, based on his expertise, of course, but also on how well or badly we're treated by the doctor and his staff. If the staff seems indifferent and/or incompetent, the doctor should be made aware of that fact, preferably in writing, in a civil tone that implies disappointment rather than anger and a litany of complaints.
That said, I really hope you can have the doctor simply fax your prescription to MedDev as Cindi suggested, and get what you need without still further delay.
Jim
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Hi Jim,
Yes, I just got off the phone with MedDev; they accepted the perscription the Doctor provided and will be sending me the proper device via UPS Red...I should have it by mid-day tomorrow. The Doctor was actually very apologetic regarding the clerical error that caused this latest delay. It was the same office staff that caused the initial Gold Weight Implant surgery to be delayed by a week...they didn't place that order either.
I had a similar, unexplained long wait experience with a Cardiologist earlier this year. I was left alone in an exam room for about the same length of time...I got tired of waiting, so I got up and walked out. I was approached by several nurses along the way and I guess you know me well enough from my writings, to know I was curt with them as I headed for the exit. Their office manager did call a week or so later and offered an apology but by than it was too late, I was already setup elsewhere. Funny thing, she didn't know I'd already picked up a copy of my records just the day before for my new Cardiologist. I haven't been back to see him since...in fact, my new "lady" Cardiologist is much nicer anyway and I hardly ever wait more than a few minutes for her to come into the room!
I'll be wearing my external weight by dinner time tomorrow thanks the Cyndi and this Forum...outstanding!
Thanks!
;)
Doc
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When I was in need of an eye weight my eye Dr called his fellow Opthamologists and asked them if they had a particular weight on hand. He actually drove over to another office to pick one up. I can't believe you have to wait that long for something so simple.
And by the way, I totally agree with you that our time is just as valuable as the Dr's. I understand they get emergency's (delivering babies, emergency surgery, etc) but if their office staff would just be proactive to share with patients when that occurs I think it would go along way to at least give the patient the opportunity to reschedule or if they so choose, wait. I feel the same way about hair dressers and other appointments like that, our time is money too!!
Doc, good luck with the eye weight!! I know you will enjoy being able to close your eye.
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Hey Doc.
I'm so glad you are getting your Blinkeze tomorrow. Remember to store it in the same place every time you take it off. They're very easy to lose.
Cyndi
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Doc~
I am just now reading this but was going to say that you certainly shouldn't have to wait that long - glad you got good advice and it is on the way! One tip, plug the drain - or better yet, if you have a mirror far away from the sink use it!! ;D These little devils can be tricky when learning to get them on & positioned right!
Good Luck!
K ;D
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Thanks again Cyndi, I can hardly wait now...talk about timely advice, you couldn't have chimed in at a better time...super!
And K, you're right, I got a look at one of those weights today...real easy to misplace or drop down the drain...and I'm just the clown that would probably do that, the first time I go to put it in. Yikes!
Thanks again Ladies!
;)
Doc
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So, I've been wearing my new external Eye Weight since last Friday afternoon and couldn't be happier with the results. It's a little tricky to put on, but once I've got it positioned securely in the right place, its all good. Thanks again to Cyndi for the inside scoop on Med Dev! For anyone else seeking to go the Med Dev route, avoid dealing with Cid, he is a nice enough guy but doesn't seem to follow through very well, ask to speak with Jean!
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Yea Doc! I'm so happy the Blinkeze is working well for you. As a precaution, I ordered another one gram to replace the one I lost!
Hope your eye continues to feel great,
Cyndi
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Doc ~
Great news! I'm glad to learn that this issue was neatly resolved (with the Blinkeze) - even if you had to take matters into your own hands, which is often the only way to get satisfaction.
Jim
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Yea Doc! I'm so happy the Blinkeze is working well for you. As a precaution, I ordered another one gram to replace the one I lost!
Hope your eye continues to feel great,
Cyndi
Can't thank you enough Cyndi...my quality of life improved a bizillion percent when that weight arrived on Friday...I bought two just in case.
Take Care!
;)
Doc
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Doc ~
Great news! I'm glad to learn that this issue was neatly resolved (with the Blinkeze) - even if you had to take matters into your own hands, which is often the only way to get satisfaction.
Jim
You're absolutely right Mr. Jim...sometimes the bull is just more cooperative when you grab it by the horns with your own two hands...!
Thanks!
;)
Doc
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Doc,
How are you doing with the external weight? I hope it is going well. My husband had a weight implanted and it helps, but his eye bothers him everyday. Your experience with the weight was horrible. Ken's eye bothers him throughout the day. He has made frequent visits to the opthamologist and the eye looks fine, but he constantly feels like something is in the eye. When he told me that he can't even rub the eye, it made me very sad. Your insight is much appreciated.
Mandy
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Doc,
It was so cool reading this thread and seeing how the AN family helped you with the external weight.
Is this forum great or what?
Yea, Cyndi!
Maureen
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Mandy, even with the external weight, I need to use eye ointment continuously or my eye feels just as your husband describes. The major benefit of the weight is helping to keep the eye shut at night without taping so that the cornea does not get too dry. While my eye shuts completely at night, I only blink half-way so the tears (which thank God I do produce, many don't) are not distributed properly over the whole eye. The ointment does blur my vision, but my brain has learned to compensate and I see well enough to read, drive and so forth.
Your husband is wise not to rub that eye. But I have found that shutting my eye and gently rubbing in a circular motion at the inside corner (nearest my nose) gives me relief. I have never given it much thought, but tt probably helps with distributing the tears.
Best to your husband. It does get better
Sara
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I've given up on my weight...it worked well for a while but now the eye hangs open just enough for dryness to set in and requires the ointment...unlike Sara, I can't see much of anything with it applied. My Doctor suggested, and I'm waiting on insurance to approve Botox injections in the eye lid. This will deaden the nerves that hold the lid open whereby allowing the eye to close...according to my Doctor, a five unit injection will last about three months. I'm gonna give it try...couldn't be any worse than anything else I've been subjected to. May have the procedure done as early as next Monday, the 23th...fingers crossed.
;)
Doc
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Doc ~
I'm sorry to learn about this set--back but I hope that the Botox injections will solve the eyelid problem for you. You deserve a break!
Jim
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Doc, please double check with your doctor that the Botox won't cause you to be unable to open your eye. Several months of that might indeed be worse than what you have experienced thus far.
Sara
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Doc, please double check with your doctor that the Botox won't cause you to be unable to open your eye. Several months of that might indeed be worse than what you have experienced thus far.
Sara
Sara,
I asked that question, he said no, but I'm gonna ask again just to be sure we understood each other...thanks for highlighting that point.
Doc
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When I have had weights - both internal & external - I still have to use Refresh PM or drops. I used Refresh PM for 7 years before i even knew that you could get a weight & the gel did distort my vision where I couldn't see out of THAT eye but did fine seeing with just the vision from my good eye. With the weights, I use the RPM at night and Systane drops during the day - the drops allow the vision to be MUCH clearer. Did you try drops with the weight? I don't know much about Botox, but I have had nothing but WONDERFUL (not perfect) things happen with the weights!
K
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Doc,
I am so sorry to hear about your latest calamity. You are having such a rough time and I feel for you and all that you are going through.
Kaybo,
The weight has helped with the eye closing . Ken uses drops all through the day and his eye bothers him constantly. At night he uses RPM and a patch of Glad Wrap. We have been averaging about 2 visits a month to the opthamalogist to check things out and the eye looks fine, but it is a constant pain.
Saralynn,
As much as I hate to read about your having a similar experience to Ken, it makes me feel better that he is not alone in experiencing this problem with his eye. Luckily he has tears in that eye too. At night he uses ointment and a Glad Press and Seal Patch. I don't know much about the external weight since that wasn't discussed as an option. At that time, our heads were spinning and Ken was not in good shape and we thought the implant would be easier.
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Kaybo & Mandy,
I should probably continue using the external weight but the constant irritation from the dryness is more than I'm willing to deal with; the eye doesn't close anymore. Also, my eye lid is badly scarred from the initial procedure to implant a Gold Weight and than from the wound resulting from an extreme Hemorrhage that forced the gold weight through my eye lid two weeks later. This adds to the difficulty I'm having. I really can't tell if the eye is producing tears or not; it's taped shut and patched all the time.
I have RPM and also a prescription antibiotic ointment that I use each time I change the patch, but, can't see well with either in my eye. Besides, the eye still points up and to the right; pointed right at the bridge of my nose and causes double vision. We frosted the lens of my new glasses with Shelf Contact paper to help stop the double vision, but I can't go with just a weight on my eye...the slightest bit of air on the eye ball drives the irritation to unbearable levels. I hope this Botox thing works...I'm really frustrated right now. The bad news is the Doctor says the cornea is in pretty rough shape now...we really need to get a handle on the situation!
Thanks!
;)
Doc
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Doc,
My heart goes out to you and I hope and pray that you will find some relief soon.
Mandy
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Doc, I am so bummed that the external weight is not working out well. I'm a Botox fan (3-4 times a year for 3 years prior to my surgery ;)) so I'm curious how it will work for your eye. My left eye is still noticeably more open than my right so a Botox induced droop sounds like it could be helpful. Do you think you'll need an external weight to help with blinking (maybe a lighter one)?
I'm back to using my 1 gram Blinkeze just to reduce the frequency and amount of drops I need - down to once a day now! My eye closes but my blink is a little slow which must be adding to my dry eye issues.
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Hi,
I'm not sure if I'll need to wear my weight to help w/the lid closing after Botox...another question to ask at Monday's appointment. Which drops should I look for / buy to help keep the eye lubricated? Any advice on which works best / well?
Take Care!
;)
Doc
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Doc - also talk to your doctor about moisture chamber glasses. They might help. Since you already wear glasses, motorcycle or swim goggles probably would not be appropriate, but www.7eye.com has some styles that can take prescription lenses. Or there are moisture panels that can be affixed to your regular glasses. See http://anausa.org/forum/index.php?topic=10424.0 - I think there is a link to the manufacturer.
Back in the days when I was trying desperately to figure out what to do, I would wear a pirate-patch from the pharmacy over my left eye unless I was going out in public, and sometimes even then. I used lots of Refresh PM as well. It was the only thing I found that kept my eye from feeling like it was being scratched by sandpaper. I did not tape the eye shut because just having it covered by the patch was enough to keep it from drying out.
That seems like such a long time ago now. I'm sorry your experience with an eyelid weight was not the same as mine, because it certainly improved my quality of life.
I hope the Botox works for you. My skepticism stems from a single experience with Botox, to try to stop hemifacial spasm. It was a disaster.
Sara
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Hi Doc.
I am allergic/sensitive to the preservatives in eye drops so I use Refresh Plus, Celluvisc (my favorite), and Systane (sp?) all for sensitive eyes. Before going to bed I use Refresh PM which also works great but you wake up with sticky eye lashes.
Hoping you get relief soon,
Cyndi
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Hey, Doc, sorry to hear the external weight hasn't worked out for you either. Glad to see, however, that you're getting lots of good advice from those in the know about eye stuff around here. My eye trouble was, fortunately, only a few months long, but I know it's so irritating and aggravating. Hope the Botox will finally give you some relief!
Cindy
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Thanks Ladies for all the input and advice. My next appointment is Monday afternoon...can't wait already to get all these questions you've been feeding me answered. I'll try those ointments you've suggested. I have the Refresh PM already and it feels good but obviously doesn't last very long. Sara, I can also go with just a patch, no taping the eye shut...as long as the eye ball doesn't come in contact with moving air, its fine, but unless the eye is closed, the cornea is still as risk so I continue to tape...
Thanksgiving is coming up...I hope I can add eye relief to the growing list of things I'm thankful for...this forum among them!
Take Care!
;)
Doc
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So sorry to hear about your eye woes, DOC.
So much for just like a "trip to the dentist" like I mentioned in a past post :(
You just have fragile eyelids. It'll happen. Just keep your eyes nicely lubed!
Maureen
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Hi there Doc: I'm with Kay on this one - after your eyelid heals you should look into possibly getting another weight, maybe a platinum 1.8 gram (chain) put in (if in a few months you need it).
In the meantime, protecting your cornea is your main concern.
I have total paralysis in my right eye since 6/2006. I am constantly putting Refresh PM lubricant in my eye during the day (I have gotten use to the 'blurry vision' - what are you going to do ?). Every night I put Refresh PM lubricant in my lower lid, then put on the NITEYE Bubble Bandage, then a BreatheRight strip (since my right sinus is also paralzyed, it always feels stuffed, the BreatheRight strip really opens up the sinus).
When I can't 'mesmerize' myself into sleep (b/c 1 eye is always open) I'll take a Xanax 0.25mg or Trazodone 50 mg. That happens maybe once a week.
Wishing all the best, always good thoughts, Nancy
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Nancy,
I really don't want to go through the whole Weight Implant procedure again. Besides, the Doctor that performed the first procedure won't do it again because he says the Plavix I must to take for my heart caused the Hemorrhage that forced the weight to break through the eye lid...and that will only happen again.
Nancy - I've been using Refresh PM all along. Its plenty soothing but I still have to keep the eye covered; tape and patch. Like you said, the primary goal is to protect the cornea and I've already been told mine is beginning to look pretty ratty.
No more implant procedures; I'm done with that. I've got my fingers crossed that the upcoming Botox procedure will do the trick. The only other option is sewing the eye shut...not gonna happen either.
I already have a pretty rough time sleeping. I'd hate to think of having to do it with one eye open...yikes!
Thanks Nancy!
Take Care!
;)
Doc
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I had my eye sewn completely shut for 3 months because my cornea was so incredibly scratched up...actually it was the best as far as I didn't have to do ANYTHING at all for care! Of course...it was a little funny looking!! Not too horrible though - I still taught a whole class of 1st graders! ;)
K ;D
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I wondered what caused your problems, Doc. I did not realize that it was due to a hemorrhage. The blood thinners that you take would also explain the impressive bruising you had after your surgery.
I hope Botox helps with your problems.
Sara
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Nancy, after I read your post this morning I started thinking a little more about the consequences of allowing my eye to be damaged further. I put the Blinkeze back on, loaded up the eye w/Refresh PM and went to CVS on a mission. My friendly neighborhood CVS Pharmacist recommended I try using "GenTeal Gel Drops" for Moderate to Severe Dryness. I bought a bottle and have since loaded my eye up with it. I haven't had a patch on now for several hours...its bearable and I can feel a slight stinging in the corner of my eye.
Honestly Nancy, you scared me a bit when you said implant. Kay, you're a brave lady! Sara, you talk about bruising, I bleed like an inept prize fighter! I had a Triple Bypass in April 2008 and than six stents put in afterwards when all three of the Bypass Grafts collapsed all at once...that was cool...I was on a Delta flight to Buffalo when that happen...woohoo...don't you just love business travel...they gave me all the little bags of Peanuts I could eat; even took some home!
Almost forgot...today is my 52nd Birthday but I still feel 51 if you really want to know!
Take Care!
;)
Doc
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Happy Birthday. Make sure to look at your profile today, they should have served you up a little slice of birthday cake.
Sara
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HAPPY 52ND BIRTHDAY TO YOU, DOC!
What a year, hopefully this one coming up will be better.
Keep your eyes lubed :) I also tried the Gen Teal Gel Drops and found that it stung a bit.
I use AKWA TEARS ointment from my doctor. Works for me.
My cornea is OK, not great, so I'm a little paranoid and keep it lubed all the time. I'm also used to the blurriness, and can read, drive, etc.
Hang in there.
Maureen
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Happy Birthday. Make sure to look at your profile today, they should have served you up a little slice of birthday cake.
Sara
[/quote
Ha...how do you like that...I got a piece of birthday cake...thanks for the heads up Sara!
Take Care!
;)
Doc
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Hey Maureen,
Thanks for chiming in. I'm seeing the Eye Doctor on Monday. I'll ask about "AKWA Tears." So I'm not the only one the feels that little stinging with the GenTeal?!? I have to tell you though, so far, it seems to be working better than Refresh PM alone. I've managed to load my eye up with both; its bearable thus far. It's really gonna take some time to get used to the weight being stuck on my eyelid...feels strange, like its always about to fall off.
Thanks for the Birthday wishes...my boys are taking me out to Chilies for dinner in a little while.
Take Care!
;)
Doc
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Blogging: http://www.docbreger.com/Home/Tumor_Talk/Entries/2009/11/21_Drops%2C_Ointments_%26_Blinkeze.html (http://www.docbreger.com/Home/Tumor_Talk/Entries/2009/11/21_Drops%2C_Ointments_%26_Blinkeze.html)
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Doc .....
I had not been following this thread during all of my personal travels and husband's medical crisis and because I did not have anything to add to the eye issues. However, I just now read the whole thread and my what a time you have had ..... not only with eye pain & irritation, but medical staff pain & irritation! Not fair!!!
WOW, I truly hope you have been able to re-focus on your birthday today.
HAPPY BIRTHDAY, DOC!!
Clarice
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Doc~
I have no feeling in that eye, but i tried the GenTeal b/c someone on here mentioned it and it makes my eye red!!
K
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Happy Birthday Doc: & I'm sorry about being so 'gung ho' on the eyeweight. I wasn't thinking about the blood thinning medication. And I certainly hope the Botox works.
I'm very interested in hearing how it turns out. This may be the wave of the future in helping with eye closure (I could sure use a mm or 2 more closure !).
I also was unable to use GenTeal - it burned & turned my eye red. I use Refresh PM exclusively. (AKWA tears didn't work for me either - drops aren't thick enough).
Always good thoughts, Nancy
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Happy Birthday Doc: & I'm sorry about being so 'gung ho' on the eyeweight. I wasn't thinking about the blood thinning medication. And I certainly hope the Botox works.
I'm very interested in hearing how it turns out. This may be the wave of the future in helping with eye closure (I could sure use a mm or 2 more closure !).
I also was unable to use GenTeal - it burned & turned my eye red. I use Refresh PM exclusively. (AKWA tears didn't work for me either - drops aren't thick enough).
Always good thoughts, Nancy
Gosh, you don't owe me an apology...you set me straight!
Thanks Nancy, you take care!
;)
Doc
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Doc~
I am so glad that Nancy's post got you to thinking more about eye care - I was very concerned for you (& your cornea) but couldn't think of a good way to write it - I certainly didn't want it taken the wrong way! It is one of those things that just stinks - no way around it - but that we have to bite the bullet & do whatever we can to make it work. It might mean not being able to see well at all out of that eye or even having it be VERY unattractive, but the main thing is that we protect out corneas!
K ;D
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Doc,
Happy belated birthday!
Just curious if you've tried Refresh Celluvisc?
I haven't tried Genteal, but there was something else I'd tried (I think it was called SootheXP?) that kind of burned when I put it in and my corneal specialist told me that's a good reason to not use it. He compared the exposed cornea to like a road-rash on your knee. Since switching to Celluvisc (and the addition of a punctal plug) I haven't had anymore irritated eye and last week the corneal specialist said my eye looked great, "even better than last time". The only down-side is they do blur vision, but I'm getting used to the whole "one-eye" thing (kind of goes with the "one ear" thing..).
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Doc,
Happy belated birthday!
Just curious if you've tried Refresh Celluvisc?
I haven't tried Genteal, but there was something else I'd tried (I think it was called SootheXP?) that kind of burned when I put it in and my corneal specialist told me that's a good reason to not use it. He compared the exposed cornea to like a road-rash on your knee. Since switching to Celluvisc (and the addition of a punctal plug) I haven't had anymore irritated eye and last week the corneal specialist said my eye looked great, "even better than last time". The only down-side is they do blur vision, but I'm getting used to the whole "one-eye" thing (kind of goes with the "one ear" thing..).
Hi...!
Thanks for the Birthday wishes...I haven't tried the Refresh Celluvics yet. Sorry to say, I took the weight off a few hours ago and taped / patched the eye shut again...just can't handle the irritation...its awful. I see the Eye Doctor tomorrow afternoon. Hopefully he's gotten approval from insurance to do the Botox immediately. I know this whole tape and patch thing probably isn't good for my cornea...but the eye is completely shut now and well medicated. Wearing the weight left my eye open several millimeters; I just can't handle the constant irritation. I could only manage about 36 hours with the weight...I slept through the night with it in...when I close my good eye, the bad one closes fully with the weight...but I can't walk around all day with both eyes shut.
I've been wearing a patch since surgery and have been without hearing in my left ear (translab side) for over two decades; tumor related but didn't know it thanks to some top notch military doctors.
Take Care!
;)
Doc
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My oculoplastic surgeon wanted me to switch from Refresh PM to Celluvisc, but the Celluvisc wasn't strong enough.
It is a soothing product though.
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HAPPY BIRTHDAY DOC!
I hope you eye appointment goes very well today!
Cyndi
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Well, I saw the Eye Surgeon earlier this afternoon. He said he did some more reading on Botox and has decided the limited 4 to 5 weeks benefit it might provide is not worth it. He also mentioned he'd rather see me have my CK treatments that will start pretty soon without a chemically induced droopy eye...if that makes sense?!?
Anyway, he talked me into having a procedure that will result in the eye being partially sown shut along about a 5mm run off-set to the outer portion of the lid. In his words, he'll rough up the upper and lower lid, than stitch them together; the stitches will come out in 7 to 10 days. I'll still have some vision in the corners and will still have to use an ointment of some kind for lubrication. The major plus, the cornea will have the natural protection that the eye lid provides. I really didn't want to undergo another procedure but I'm running out of options. Besides, Kaybo walked around for three months with her entire eye sown shut...I'm sure I can manage with just a portion sown shut for what will hopefully be a short time. That and I don't want to go through life knowing I may not be as tough as a First Grade Teacher...just joking Kay...sorry, can't help it!
The procedure is scheduled for this Wednesday, November 25th, in his office...wish me luck!
Take Care!
;)
Doc
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Doc ~
I'm sorry you have to deal with all this but of course, I hope the procedure will be successful. Best of luck to you on Wednesday!
Jim
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Hey, Doc
Sorry that your visit did not go as planned with the BOTOX treatment.
I think you are wise to accept the doctor's advice. Kay had her eye completely sewn shut, I had my eye half stitched shut, so 5mm to me sounds like maybe a 1/4 stitched shut??
Hopefully will be tolerable. Your cornea will thank you! If your cornea goes bad, that's really really bad...... you don't want to deal with the after effects of that
(something about removal of the eye, with eye prosthetic, being the worst case scenario.......)
Let us know how yet another eye procedure goes. And I will not say it's just like a trip to the dentist, because I know better!!!
Maureen
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Thanks Maureen...I'll be sure to post a progress report after the procedure tomorrow afternoon. FYI - I just changed Dentists...really!
Take Care!
;)
Doc
P.S. Truth be known, I'm a big chicken and can't stand going to the Dentist, and more recently, the Eye Doctor!
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Doc,
I want to wish you a belated Happy Birthday, and also good wishes that you'll have a good result from tomorrow's procedure. I will add my 2 cents in and say that after fighting over a year to not have my eye sewn and weight implanted, I am so pleased now that I've had it done (2 weeks ago). I know you can't have the implant, but the few stitches in the corner really make a difference! Such a relief from eye care ritual at night, too! I do still use the gel at night, but no covering it. My biggest problem now is adjusting the eye drops, how much is enough but not too much. I probably should have had it done long ago. :P
Get those frozen peas out again ...
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Hi Cheryl,
Even if the Doctor was willing to attempt a second implant, I wouldn't do it. I did have a tightening procedure on the outside of the lid at the time of the failed implant; honestly can't tell if that had any effect. Tomorrows work will be stitching the eye shut along about a 5mm line, off-set from the center...just enough to close the bad eye when I close the good one...but you already read all that.
Glad to hear your implant is working for you. I sure wish that was my case too; not meant to be I guess.
Take Care and Enjoy the Holiday!
;)
Doc
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Hang in there Doc! I really hope your dr visit tomorrow brings your eye some well deserved and long overdue relief.
Best wishes for an easy & enjoyable Thanksgiving,
Cyndi
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Blog entry about todays Eye Procedure w/Pictures: http://www.docbreger.com/Home/Tumor_Talk/Entries/2009/11/25_Third_Surgical_Eye_Procedure.html (http://www.docbreger.com/Home/Tumor_Talk/Entries/2009/11/25_Third_Surgical_Eye_Procedure.html) Feel free to leave comments on the Blog. Thanks again for everyone's kind words of advice and concern!
Take Care!
;)
Doc
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Doc,
Was thinking of you today and I just read your blog..Let's keep our fingers crossed......
You're on MY prayer list!
Do you have pain pills? I know tomorrow is Thanksgiving and you want to prepare the feast, but try to delegate... and have a thankful day for
well.....being alive!
Maureen
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Hi Maureen,
No, I refused the pain pills, a decision I'm regretting. I didn't have any issues sleeping. In fact, I slept pretty darn good. I think thats because I knew I didn't have to wake up at the crack of dawn to fire up the office like I do most Thursday mornings. I'll be taking off the bandages tomorrow afternoon and will update my blog with some new pictures and status.
I wish you and yours a happy and healthy Thanksgiving...I put the bird in the oven at 7:00 this morning...tons more to do!
Take Care!
;)
Doc
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Okay, then.
You go, guy! Extra Strength Tyenol and frozen peas in between basting!
Good luck tomorrow :)
Maureen
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As instructed, I removed the bandage from this weeks eye procedure earlier today. Like the implant surgery, this procedure also left my eye bruised, swollen and still tender to the touch 48 hours later. I’m going to try the eye shield I was given on Wednesday, to see just how well it works protecting the eye while I sleep. Following Doctor’s orders, I’ve been applying ointment on the wound to head off infection and promote healing. The Sutures are scheduled to come out this coming Wednesday morning during a nine a.m. appointment. I haven’t decided yet how I feel about this latest attempt to save my cornea. I only hope this is the last.
I posted a picture of the eye as it looks today on my blog...following the globe to Tumor Talk and click on Third Surgical Procedure...scroll to the bottom of the page for a look.
Take Care!
;)
Doc
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Ewwwie,
I saw the photo. Things will calm down. Gotta baby that eye. And following doctor's orders is good!
Hopefully this will be the ticket.
Hang in there, think positive! Hope you had a nice Thanksgiving with your boys....
Maureen
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Thanks Maureen...all I can do now is follow Doctor's orders...here it is late Saturday afternoon and the eye is still pretty sore. I really should have taken the prescription for the pain killers the Doc offered...stupid man tricks, I tell you what!
Anyway, life is good...me and my boys had a great Thanksgiving...they somehow managed to get their girlfriends to do the dishes while we napped waiting on dessert...yummy New York style Cheese Cake...best I've had in a long while. Hope you enjoyed the holiday too!
Take care!
;)
Doc
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I saw the Eye Surgeon again this morning. Last weeks procedure is healing "very nicely" although still very sore. He has elected to wait until Monday, the 7th of December to remove the stitches rather than this morning as originally planned. So far, having my eye sown shut--half way--seems to be working well. I can go all day without issue and sleep nicely with the Plastics Shield protecting the wound. I am applying ointment hourly to be sure is stays plenty moist. Sara had asked why the stitches were being removed. The answer I got was this is a permanent procedure with no bolsters. He can / will open the eye back up when normal function returns--notice I said *when* not *if*. The most encouraging news I got today is he feels now that the Cornea is no longer in immanent danger...that's a real relief!
Updated the blog with a new picture taken a minute ago: http://www.docbreger.com/Home/Tumor_Talk/Entries/2009/11/25_Third_Surgical_Eye_Procedure.html (http://www.docbreger.com/Home/Tumor_Talk/Entries/2009/11/25_Third_Surgical_Eye_Procedure.html) Scroll down to the very bottom to see the pic and latest update.
Take Care!
;)
Doc
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Hey Doc,
Sounds like our eyes were about the same in closure.
I hated the feeling post of- I just wanted to rip the eye back open. Very aggravating.
But I got used to it, and used to people looking at me weird too!
Mine was half sewn shut about 4 months.
My cornea was not looking good immediately after my brain surgery, so they actually did a "make shift" eye closure with a cotton wedge and stitches until the Tarssorphy. (sp?) No fun.
Turns out my eye reflexive mechanisms are poor. The oculoplastic surgeon could tell by the exam, and by how my other eye responds and blinks. I don't blink real obvious like some people.
So hopefully this is the ticket. Hang tough.
Gotta go put those xmas decos up.
We are going to TX in a week for my daughter's grad from College in San Antonio, so am trying to get xmas ready. (I love stress :o)
Maureen
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Hey back at you Maureen!
Our eye experiences have been very similar. While I was still in the hospital, they did one of those partial close procedures with the bolsters on me too. It lasted about two weeks until the top bolster pulled loose...that hurt.
I think I'm gonna be fine now...time will tell of course, but I'm very determined at this point!
Take care and enjoy your trip to TX...my son graduates in May '10...congratulations on your daughter's accomplishment. I don't think I'll be doing any decorating this year...might fall off the ladder...yikes!
Take Care!
;)
Doc
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Tomorrows work will be stitching the eye shut along about a 5mm line, off-set from the center...just enough to close the bad eye when I close the good one...but you already read all that.
Doc
Oh MY, goodness "Doc" (who is not really a "doctor") I wish I had noticed and read this post, of yours, sooner.
HUGS
I am sorry I just saw it today- for the 1st time. (I am busy with kids, aging parents… and not on the ANA forum as much as I used to be. Call me the “melted cheese†of the “sandwich generation†– this autumn…)
Your stick-on-eye-weight was simply NOT heavy enough.
I have 2 stick-on-eye weights. I started off with one of the heaviest, a 2.4 with max width or heavier (I “think†I have to find the original receipt to verify) …and then went down to a 1.2. with min width (again I have to check the receipts for the exact sizing). I have the freedom to switch in and out as I choose.
Here is the PDF from Med Dev with the sizes. I am thinking that you may need the max width too.
http://www.fci-ophthalmics.com/files/pdf/blinkeze.pdf
I have never had Botox in the “eye area†as this is known and well documented to make it worse. (HUH??? “Hold the eye openâ€?! Oy ya ya- they are just re-paralyzing the eye lid again and regressing your progress! This sounds “quack†to me.) I only have Botox in the neck and chin as these synkenisis muscles were inhibiting the eye from working. When the Botox is in affect there- I do not need the weight at all. If I am without Botox, totally sleep deprived, stressed and drank way too much coffee (you know the “vicious cycleâ€), not diligent on my facial therapy- I occasionally have to put on the bigger eye weight on to fire up the nerves for a few hours. (This is why I have not given mine away and hang on to these for the rare time I “might†need these still.)
It sounds that you are NOT working with an educated professional who knows what they are actually doing. (Oy ya ya!!!)
HUGS
Are you working with an “oculoplatsic specialist†or “neuro- ophthalmologist�
I am sorry but I think “if†your doctor had initially started you off with the heaviest stick-on-eye-weight – you would have been just fine. As you improve then you go to the lower weight. Starting off with the lighter weight seems to have set you up for failure- here. I am thinking this should have happened even before one was surgically implanted -to wait and see how you actually progressed.
The photos you posted on your blog mortify me.
http://www.docbreger.com/Home/Tumor_Talk/Entries/2009/11/25_Third_Surgical_Eye_Procedure.html
What state are you located in?
If you want I will contact my Oculofacial specialist, who has proved to be nothing short of fantastic (many of my local ANA buddies agree.) Or you can call his office and leave a message, yourself, to see if he has contacts/colleagues closer to you. I know you have had not so great experiences with some doctors- but please be ever-so-kind to this one. He is a rare gem and one of my VERY favorite doctors here in Oregon State. He is one of the few who also has exceptional office and clinic staff. (The combo of great doctor and good clinic/office staff is a rarity… they all have great people skills I so appreciate.)
Here is Dr. Ng’s info
http://www.ohsu.edu/xd/health/services/providers/ngj.cfm
(There credit has been given where credit is due- in a “patient reviewâ€. NO doctor cronyism there. ;) He actually did a presentation for my local ANA group… I am not the only one here- that thinks he is excellent. Other ANA’ers going to him now-too.)
… See if he knows of a reputable colleague in your area.
CYBER HUG.
DHM
P.S. He and my nueromuscualr facial retaining therapist, Wanda Crook of San Diego, did a presentation together … and I showed my progress photos to my ANA group (ie documented “proof is in the puddingâ€)… I think I should propose that they present at the Cincinnati ANA symposium. More people need to hear about the less evasive approach to facial nerve damage and eye (lack of eye-lid closure is caused by the facial nerve) care & recovery. You are a prime example, in this thread, as to WHY we need to get the word out there- more.
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Hey DHM,
Wow, had a thing or three to say did you?!? I'm seeing an Oculoplastic Surgeon. Prior to him joining the practice, I was seeing one of the partners who did the first procedure which was a temporary closure with bolsters...it failed within two weeks. The "OS" did the Weight Implant and every procedure since; he also prescribed a 1.8 gram weight which I ordered myself from MedDev; I'm real familiar with them. The Surgeon told me this morning to bring the weight with me when I return on Monday to have the stitches removed. He thinks the combination of the weight and my lid being sown together will be all I need for now. I'm in Atlanta, GA, to answer that question. Sorry the pictures on my blog disturbed you, that's the only face I've got; oh, you were referring to the eye, ha!
Thanks for jumping in on this thread...always good to have a twenty ninth opinion. By the way, I mentioned to the Surgeon that I wished we had tried the eye sewing deal before the implant, he didn't say anything, just walked away.
Take care!
;)
Not a Doctor
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Thanks for jumping in on this thread...always good to have a twenty ninth opinion. By the way, I mentioned to the Surgeon that I wished we had tried the eye sewing deal before the implant, he didn't say anything, just walked away.
Doc,
Wouldn’t you rather just have tried double-sided sticky tape before stitches and scalpel (on the eye lid to insert the weight implant) were used?
When I have a regression with my eyelid function (the sleep depravation coffee thing :-\) ... I find the lighter weight not that helpful. But it did have its time and place when I transition from heavy weight to no weight. The heavy one seems to just close the lid (yes heavy and cumbersome at times) and then eventually the lid starts up again. Sort of like jump stating a car... until the alternator get the battery charged up.
(Oh one of those car analogies again ;)... But hey I have a great mechanic and we did give him a glowing report on Angie's list.)
Oh your face is just a fine face :-* ...and did NOT mortify me... what mortifies me is all the stitches and bruising to your eye-when some temporary double-sided sticky tape might have worked...
Man you are one tough cookie. :-*
I guess if I had not found Dr. Ng... I might have been in the same boat as not all OS will try or advocate the stick-on eye weight. (Especially if there is a profit margin at stake and that is what motivates them- over patient wellness.) Also many AN’ers do not get eyelid recovery and do need the implant. But for those who the facial nerve recovery DOES looks promising I think the stick-on-weight, and the also some transpore tape at the side of the eye to keep drops in (see ANA eye booklet) , is THE way to go. Know that there were times when I was so sticky-taped-up I thought I would soon come “un-gluedâ€... It takes patience … and I know some AN’ers who lost their eye weight down the sink... with the dirty dishwater.
Have you had any eyelid function return- at all?
DHM
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Have you had any eyelid function return at all
DHM - Unfortunately no, I haven't had any function return, that includes zero relief from the facial paralysis that plagues me. I'm even still having trouble swallowing and must be careful when eating and, I use a straw to drink everything, even coffee from a sippy cup. I am only four months out from Surgery and all I really have is time to get better...hopefully thats the trick to beating back all the nasty side effects of AN Tumor Resection, patience and lots of time. Truth be known, this cookie is getting a little rough around the edges.
Thank again!
;)
Doc
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Doc,
Here is an old archived post mine when I was once where you were.
http://anausa.org/forum/index.php?topic=5358.msg48302#msg48302
I had my 1st teeny weenie itsy bitsy sign at 3 months and 5 days
You are at 4 months and 3 days…
Know I can smile and my eye does not need an eye weight now (but it sure did then!!!). However I will be honest and tell you I have synkenisis now. The longer this takes to come back the higher chance for the nerve re-growth to go down the wrong channel… but this does NOT always happen.
What did your surgeon say about your facial nerve when they tested it at surgical closing (E- stim)? Does the surgical team predict facial nerve function will return?
Another BIG HUG to you.
DHM
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Doc,
Look at Jeanlea’s progress
http://anausa.org/forum/index.php?topic=10177.msg119291#msg119291
Late recovery can happen…
DHM
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DHM - My Neurosurgeon told me it could take up to a year or longer to regain any eye function or notice any relief from the facial paralysis; but I will experience some renewed function at some point. He did very clearly state that my 6, 7 and 8 nerves are intact, and will function again at some level, but will never come back 100%. My left vestibular nerve was severed during surgery so I'll always have balance issues to some degree. I am deaf in my left ear and have been for well over a decade; that will never get better. I've seen an ENT; I am not a BAHA candidate; end of that story. Funny, I already saw both of the older threads you sent links for. I've been sitting up nights, doing a lot of reading on the Forum...it's not always positive but it is certainly informative and to the point. I still think I'm lucky, I've always been a *when* kind of guy, not an *if* kind of pessimist...and I'm very much alive and yes, well!
Thanks as always!
;)
Doc
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DOC,
I just came in from outside as I am working on the acreage getting it “to bed†for the winter here. Only in Oregon do we mow our grass in December :-\…
As I was riding away with my buddy, John Deere, (could not do that 1 1/2 years ago!) I was stumped on this one… Came in and just had to ask you- before I go out to do more thinking and fresh crisp air breathing (and reflecting) on this wonderful bright sunny day. (No rain- quite unusual for these parts)
Here goes…
Well, I saw the Eye Surgeon earlier this afternoon. He said he did some more reading on Botox and has decided the limited 4 to 5 weeks benefit it might provide is not worth it. He also mentioned he'd rather see me have my CK treatments that will start pretty soon without a chemically induced droopy eye...if that makes sense?!?
I am confused? So he actually injected Botox into your face? “Not worth it†mean he did not inject? Can you clarify?
Have you had any eyelid function return at all
DHM - Unfortunately no, I haven't had any function return, that includes zero relief from the facial paralysis that plagues me. I'm even still having trouble swallowing and must be careful when eating and, I use a straw to drink everything, even coffee from a sippy cup.
So basically your face in still at the placid stage. Yes?
I have had much dialogue with my OS and went to ALL the face workshops at the ANA symposium in Chicago – but I am NOT a doc. All explained that you do NOT inject Botox into placid face- only hypertonic or functioning muscles. So why on earth, I ask was he injecting Botox into an already placid face? This seems bizarre to me that one would inject at that stage. I hope some other forum-ite with facial palsy experiences pipes in here.
Re the ENT
He did very clearly state that my 6, 7 and 8 nerves are intact, and will function again at some level, but will never come back 100%. My left vestibular nerve was severed during surgery so I'll always have balance issues to some degree. I am deaf in my left ear and have been for well over a decade; that will never get better.
Your 8th cranial nerve cannot be in tact if you have no hearing and the balance nerve was severed.
Here is the 8th cranial nerve function
http://en.wikipedia.org/wiki/Vestibulocochlear_nerve
I am deaf in my left ear and have been for well over a decade; that will never get better. I've seen an ENT; I am not a BAHA candidate; end of that story.
If you are deaf in the one ear you ARE a candidate for the BAHA. So why is you ENT saying you are not? I don’t get it.
Read this
http://www.umm.edu/otolaryngology/baha.htm
Also don’t believe anyone that once the balance nerve is severed you will be plagued with balance issues. Mine was severed… and I am very determined to get the unicycle thing before I am age 50.
Read this one.
http://anausa.org/forum/index.php?topic=5584.msg56072#msg56072
After you see the photo- read the entire thread. I chose not to believe the doctor and I knew that vestibular therapy had worked for others.
Keep telling us more and we can ALL here point you to some good resources. Do not give up... lots can be done here and you are not the 1st, or last, to go through this.
DHM
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No Botox - he decided not to do it.
I have little feeling on the left side of my face; no eye lid function, my eye points up and to the bridge of my nose, droopy eye brow, cheek and so on down the face.
My hearing Loss is due to Bone damage not nerve damage. There's a small bone involved with hearing; mine was crushed by the Tumor early on and the same ENT that noted the bone damage also noted that I'm not a candidate for BAHA.
My balance has actually improved because I work at it. I personally do not believe it will ever be 100%...better but never perfect again.
I have an appointment on January 11th at the Atlanta Ear Clinic. Dr. Cronin did a presentation at our last group meeting here in Atlanta and I'll be seeing her regarding all the facial issues I'm still experiencing. She thinks they can help me.
Doc
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Doc,
Is this her?
http://www.atlantaearclinic.com/about_gaye.htm
OK OK Sounds to me you are doing the right thing... and you know what you are doing there.
This looks like just the place you need
http://www.atlantaearclinic.com/
If it is a great place- be sure to post. Patient testmonies have MUCH weight here. ;)
:-\ Ok I am still not on board that you are NOT a candidate for the BAHA- if the 8th cranial nerve was severed. I think you should get a 2nd opnion. Send the new ent/audiologist/neurotologist (Who ever you choose for a BAHA 2nd opinion) your MRI scans. This does not mean you are abandoning your ENT- just getting confirmation (or contradiction ;)).
Schools out- I have to stay off the forum for the rest of the day... family has me hopping. Both my youngest and myself are practicing the unicycle.
I believe that I can get to almost 100% balance and I am a BIG believer in brain plasticity.
http://en.wikipedia.org/wiki/Neuroplasticity
I just can't pirouette, in dance, as well as I used to... but I can do a double one now... and 2 years ago I would want to hurl just turning with my walker.
You ARE going to get better. Keep moving forward.
Cheers,
DHM
PS Cute PUG! I have a yellow lab... who can retrieve the cell phone or cordless I left off the receiver being have no directional hearing to locate it myself. I would place a "treat" with the phone and call it. When it rang he found the treat next to the phone... we went from there. He know helps me find it (and God help me if I don't produce a treat!) He would not leave my side until I was back walking normally. Every time I had to scramble over a fallen tree on the path , in my woods, he would wait and allow me to lean on him as I got over. If the kids are calling me from outside and he knows I do not hear them - he licks my hand until I go to them. Work with your pug and see what he/she can do for you too.
http://www.goldenearsdogs.org/home/training_your_own_hearing_dog
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You sure a something...keep it coming.
Yes, I'm seeing Dr. Gaye Cronin...she'll well know down here and comes with good marks. Cindy from our area had her come in and speak with our group, that's how I know of her--she seems really nice too. I'll let you and everyone else know how things go there.
I'm not worried about hurting my ENT's feelings, he's not on my Christmas card list or anything like that, neither is my neurosurgeon for that matter. I just don't think I'm going to get a different read. I've done some reading here and there and it doesn't sound (no pun intended) good. My 8 nerve is intact according to my neurosurgeon.
The Pug is my buddy Freddie. He isn't just posing for the picture sitting up on my shoulder...he "always" either sits on my shoulder or directly on my head while I'm lying in bed. When I came home from the Hospital after my brain surgery, he stayed in the bed with me for several days. He did the same thing in April '08 when I came home from my Heart Bypass surgery; never left the bed, my boys had to come up and get him to eat and go outside. He's a great dog and has been taught some simple tricks...not sure he's TV Remote retriever capable though?!?
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my eye points up and to the bridge of my nose,
DOC,
This is not caused by the facial nerve damage. You sound like you have oculomotor nerve issues
Here are the cranial nerves and their functions
http://en.wikipedia.org/wiki/Cranial_nerves
This sounds like Cranial nerve #3
http://en.wikipedia.org/wiki/Oculomotor_nerve
Have you seen a neuro- ophthalmologist?
I had some wild nystagmus going on after surgery- due to brain swelling. The eye was shifting all over. Settled down as the swelling did.
Is your eye stuck on one position?… As this is what you describe..
DHM
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I am going to chime in on the BAHA question, as it has come up before, and it is worth repeating.
The first use of a BAHA is for improving hearing on the same side as the BAHA. It is used this way when a middle ear problem, such as the small bone issue Doc mentioned, is interfering with hearing. For that to work, the hearing nerve and cochlea must be functional, and the problem has to be one of conducting sound from the outer ear to the inner ear. ENTs and audiologists are most familiar with this application.
The second use of a BAHA is to address single side deafness, or SSD. That is the use familiar to us here on the AN forum, to the point where we forget that it is not the primary use of a BAHA. For SSD, the idea is that the BAHA mounted on the deaf side will transmit sound through the skull bone over to the hearing side. It does not do anything for hearing with the deaf ear; it does allow you to hear sounds on the deaf side with the good ear on the other side. It is a less well known use for a BAHA, except among the AN crowd and others afflicted with SSD.
See this link: http://products.cochlearamericas.com/baha/introduction-to-baha/who-can-use-baha. Conductive will come up first; read that, then click the SSD tab.
So Doc's ENT is correct that Doc does not qualify for the first application of a BAHA. However DHM is correct that Doc is a candidate for the second application of a BAHA.
Doc, most of the surgery patients on this forum loose their balance nerve function on the AN side. If you take up paddleboarding, like Stoneaxe, or in other ways actively pursue restoring balance, you can adjust just as well as the other surgery patients here have done. They are not all paddleboarding or running marathons, but they can all pass for sober on flat ground in the daytime. :)
Steve
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Doc -
regarding the BAHA questions. I agree with DHM. Get a second opinion.
BAHAs are usually placed slightly above the middle of the ear, but if there is a problem with your bones, they can be placed elsewhere on the skull. Lori (lori67) has a BAHA that is placed towards the back of her head and it works great for her.
A TransEar might also be an option for you.
Jan
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Doc, glad to hear you're going to see Gaye! I have seen Peggy, another vestibular therapist in her office, for my wonky head stuff. Hope they have some answers for you!
Will touch base with you tomorrow about lunch..
Cindy
(Slight hijack here...DHM, both my boys learned to ride a unicycle a few years ago. It's quite a feat for anyone, much less someone with only one vestibular nerve - I'm so impressed that you're taking on that challenge :o)
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Hey Cindy,
Yes, I finally got around to making an appointment to see Gaye; she's very busy so my appointment is a little far out, but I'm ok with that. Cindy, do know an Audiologist in our area that does Baha work?. I'm going to take everyone's advice here and get another opinion on the subject. Thanks DHM and Steve; persuasive arguments all.
I'm looking forward to lunch with everyone on Saturday...not to worry about the weather...my knee's don't hurt!
CK appointment tomorrow at 1:00. They called while I was typing this reply...woohoo...a trip through the toaster in my near future.
Take Care!
;)
Doc
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but they can all pass for sober on flat ground in the daytime. :)
Steve
So funny that you say that, Steve, because I do sometimes wonder if I ever were to be pulled over if I would pass the sobriety test. :p Never have needed to try before and hopefully never will!
Good luck with all your appointments, Doc!
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Ok this was just posted by an Australian firefighter ...and is very cool. 8)
Looky over here folks
http://anausa.org/forum/index.php?topic=11230.0;topicseen
DHM 8)
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Ok, just to update everyone, my new appointments as a result of your many inputs in this thread:
December - 23rd - Woodstock ENT - Consult regarding possible Baha and / or alternative treatments for SSD (Left / AN Side). This is a new Audiologist for me.
January 11th, 2010 - Atlanta Ear Clinic - Facial Paralysis Therapy
Also have an appointment tomorrow with the Radiation Oncologist to begin the trip down the CK path I've known was coming; to fight off the remainder of my AN which rests on my Brain Stem.
Thanks again everyone!
;)
Doc
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Alternative treatments at Woodstock - GROOVY ! I can just imagine what they are ! (couldn't resist ... lol...)
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I'm a big fan of the event...bought Santana's Woodstock Experience (Live) Album recently on iTunes...good stuff! Carlos Santana is true Guitar Hero!
Thanks Nancy!
;)
Doc
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I was 13 y.o. in 1969, & do you believe I had the nerve to ask my parents if I could go ? (some of my friends were going !). You can imagine their response (Italian ancestry).... Joni Mitchell was my favorite - I did get to see her in NY in the early 70's though... it made up for all the rest !
Always good thoughts, Nancy
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should I mention that I wasn't even born yet in '69 - just a bun in the oven for 1/2 of that year!
K ::)
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K,
Does this mean that THIS year is the big FOUR OH?
Did I miss a party posted here on the forum? ... Man I have been just to run off my feet with the family schedule -I somehow missed it... if there was.
So when was the celebration? Or were you a December Baby? You are not even a baby boomer... you ARE just a spring chicken. ;)
DHM :)
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DHM~
No worries - you didn't miss it...I am a Spring Chic - the bid day is March 4th!
K ;D
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Doc,
Good luck with all your appointments coming up. You've got a full plate....Keep pluggn. ;)
Great input and advice, DHM and Steve!
Maureen
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The Stitches finally came out of my eye this morning...what a relief...so far so good.
Other news: I saw the Radiation Oncologist last Friday; we're going to start CK next month, after the 18th. Five treatments over five consecutive days...nothing really unusual about that. The only surprise I got was the fact that there is still a 3 cm length of the original 4.7 cm Tumor on my brain stem...I had more of a de-bulking than a resection. It makes sense; it was to big for CK to be effective before. Also learned that my number 8 is severed. The RO told me not to bother with a Baha it won't work...I called the Audiologist; they agreed and cancelled my appointment...no number 8, no Baha. Oh well, I've been deaf in the left eye for more than a decade, the noise would only scare me now. The RO did say, with conviction, that he really thinks my 7 will come back, not fully, but I will have eye lid function again some day. He also mentioned that I'd probably not regain much feeling on the left side of my face however; number 5 took a real beating and is still surrounded by Tumor.
Anyway, that's the update!
Take Care!
;) "And I really can blink now that the stitches came out...I did it for the Doctor this morning...he laughed with excitement...I felt a tear stream from my left eye!
Doc
Update: The first CK Treatment is scheduled for January 4th, 2010. 4th thru the 8th!
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;) "And I really can blink now that the stitches came out...I did it for the Doctor this morning...he laughed with excitement...I felt a tear stream from my left eye!
Wow blinking and tears?!? :o I still have no tearing, n my AN side eye... not even with chopping onions or a sappy movie i. This is great news DOC! Yahoo! :)
DHM
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Doc .....
So glad about the eye improvement following the stitches coming out ..... finally something is going right!!
Also, I'm glad you have your date to do the radiation ..... sooner is always better ..... waiting is not fun!
Continued best thoughts and prayers.
Clarice
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Yea, DOC,
Some good news! I was keeping my fingers crossed...
Hopefully one step forward, one step forward...
Stay pos!
Maureen
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Doc,
Can you give us an update? Are you still having normal tearing and blinking? I am hoping so.
Just wondering how you are doing...
DHM
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Hi,
I'm still able to Blink, not quite normal because I've got to blink both eyes at the same time for the bum eye to blink but it is a blink all the same. And yes, the tearing is normal. A lot of the pain has passed but I still, from time to time, have what I'd describe as phantom pain...no obvious reason, but it aches all of a sudden and it passes as quickly as it comes. The stitches being gone a week+ now is really great and I'm healing nicely despite all of the procedures the lid has endured.
I'm looking forward, with both eyes, ha, to this Saturdays lunch gathering of local ANer's at the CheeseCake Factory here in Atlanta...taking the eye on the road as it were!
Thanks for asking!
;)
Doc