ANA Discussion Forum
Post-Treatment => Eye Issues => Topic started by: mimoore on October 21, 2008, 12:22:19 pm
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Okay so finally I decide to have an internal weight put in and guess when my appointment is? January 30th - three months (my nerve has started to regenerate near my eye) I might blink on my own by then. I need it now to cope. Oh I am having a frustrating day!!!!!!!!ggggrrrrrrrrrrrrrrr
Michelle
sorry needed to vent
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Michelle, call the office and ask to be put on a cancellation list if something comes up sooner. I got really lucky with mine. Dr. Custer was able to fit me in his surgery schedule the very next day after our consult. The surgery nurse told me he usually has a four to six week waiting list. I'm so glad I took the opening!
Sara
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Michelle, I sort of know how you feel. It has been a bad eye day for me too. I'm typing with one very blurry eye as I'm pouring drops in about every 20 minutes. If my eye ever gets better and starts to get tears, I feel sorry for Allergan(company that makes Refresh) as their sales will drop big time.
Hopefully your eye will get much better soon where you won't need the January appt.
Patrick
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Oh Michelle~
That just stinks!! I am so sorry! I am with Sara - call back & see if you can be on a cancellation list!
K
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Thanks guys I feel the cyber love. I had to laugh at you Patrick-Refresh shares will drop once I am done with them. hehehe ;D
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I think the garage surgery business might have to add eye weights to the menu! I don't know about extra platinum or gold around the house, but we've got plenty of small washers. :D
Good advice from Sara about the cancellation list - that's what I did for my 7-12 a few weeks ago and I was able to get in a week earlier than planned. Not a huge deal, but every little bit helps!
Lori
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Hey!!
I do have a collection of weights - I have a gold one and a platinum one. I was thinking of starting a charm bracelett of eye weights, but hey, I would love to help a fellow ANer! To be quite honest, the price of gold right now, I was thinking about selling it. It made me start thinking that I should just dumpster dive behind the OR - they dug mine out of the trash b/c I said I wanted it and they forgot until Dave reminded them. Hello, that was $800-$900 an ounce!! ;D
K
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That's funny, Kay. My son announced one day that the average value of elements in the human body totaled $4.50. After I got my eyelid weight I checked the value of platinum on the internet. 1.8 grams was worth over $55, so my value has skyrocketed. Now I need to find out how much titanium mesh is lurking in my skull and add that on as well.
Sara
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Michelle,
Just an idea.....if you're not too set on having this particular doctor do it then have you checked with other docs in the area that do the surgery. It's pretty simple stuff compared to everything else you've had done. I had a plastic surgeon do mine and did fine other than too heavy of a weight which you can prevent by making sure beforehand when he's testing weights on you that if it droops before surgery......hello......it's gonna droop afterwards. I think ENT's, General Plastic Surgeons, Opthalmologist, Oculoplastic surgeons, etc. do the surgery so you could pretty much take your pick if you live in a fairly decent sized city with options.
Angie
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Hmmmmmmm good idea...I will check Monday..to be continued. ;D ;D
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Sara,
Better keep your new "value" to yourself or your son may be selling you to the recycling center for a little extra spending money. My husband told me yesterday that if the economy doesn't get any better, he's going to have to steal my BAHA abuttment while I'm sleeping so he can pay some bills. :o
Lori
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Lori,
You truly crack me up.
Angie
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hey michelle i feel your frustration i was at tthe surgeons office for my consult for the wt and tuck 2 wks ago and the soonest is sometime in december i guess there is a country wide demand for eye wts and tucks maybe in 2009 they will be all the fashion rage and all the movers and shakers will want one,
chin up or should i say eyelid up ,take care bill
ps: if you normally use an opthamalogists ask him if he might suggest someone?
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Ha ha Bill you are funny. I can only laugh because really nothing else works. In the meantime lets pray for our eye function to return and we can say "Sorry we don't need you" now that would be funny!
Michelle ;D :D ;)
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hey michelle any luck getting a sooner date than january
bill
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Hi Bill,
I'm on the list but nothing yet...in the mean time I had an EMG that showed my eye has started to regenerate. Just last Mionday it has started to tear - it will still sting from time to time because it still does not close. I am hydrating it but not nearly as often.
Thanks for asking, how are you doing?
Michelle ;D
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eye tears from time to time,especially in the afternoon round 3pm(weird), still dizzy with activity cant wait till that dissapates, met a women @ pt who had a wt in her lid for 9 years she said it was the greatest thing she ever did made me feel more convident with my decision,not sure what to do with returning to work , are you working yet if so how does that work with the dizzies
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Sounds like you are on the right road Bill. I returned to work (kindergarten teacher) at 12 weeks post op. I really pushed myself, in hidesight is was a bit too soon but I needed to get out of the house... I was getting depressed just sitting around waiting for my facial nerve to recover. Looking in the mirror every 10 minutes was getting me no where. Anyway if I feel a bit dizzy I sit down for a minute, catch my breath and try to move on. It is getting tons tons better. I'm sure you will too.
Michelle ;D
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My husband told me yesterday that if the economy doesn't get any better, he's going to have to steal my BAHA abuttment while I'm sleeping so he can pay some bills. :o
Lori
Lori -
tell James he'll have a hard time removing that abutment.
I read somewhere recently that once your abutment calcifies (which typically takes about 3 months) it's impossible to remove it from the skull without actually cutting it out of the bone that surrounds it. So if you hear any loud sounds during the night - you know, like power tools - you might want to move really fast ;)
Reading that kind of creeped me out, but it did erase my fears that something pulling on my abutment might just dislodge it ::) Guess that's something I don't need to stress too much about.
Jan
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Hey Michelle.... wow you sure are having a lot of follow up! Either my docs are slack, or i am. I have not had an EMG test or anything. I saw one of the surgeons in early September and complained of double vision and paralysis (otherwise great) and he said come back at 6 months. I am supposed to have a hearing test, but don't expect to hearing anything! Just figure i might as well be officially diagnosed SSD. I figure at that next meeting i will enquire about whether i should start with facial therapy (and might get the name of your therapist if they don't give me one, or i don't like them).
I agree that sitting in front of the mirror, or checking it every 10 mintues can be depressing and totally unproductive. So glad you got back to work and trust those little kiddes make you smile a lot.
My double vision has totally recovered now, so it just goes to show that just because you don't see the nerves healing doesn't mean it isn't happening behind the scenes. I had no sense of improvement at 3 months, but between about 3.5-4.5 months it really started to fix and now i am back to seeing straight! thank my lucky stars!
Trish
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I am so happy for your Trish. I cannot imagine dealing with DV on top of facial paralysis and SSD. Really who is kidding who you deal with whatever you are dealt don't you. Some where someones says we are stronger in the end right? Heres hoping. Anyway Joanne is at Sunnybrook in Toronto and she is really quite nice and seems to know her stuff. I see her again in December through Telehealth so I am excited to see how that works. I have a tiny tiny bit of movement and the exercises have helped to relax things. I really like how you said although we might not see things going on things may be happening behind the scenes. My eye just started to tear last Monday, still doesn't blink so evaporation is a problem but slow and steady wins the race and right now facial recovery is SLOW. I need to stop being mad at my GP, I keep thinking if he would have discovered this sooner when I started to complain 8 yrs or more ago my AN could have been discovered and I may have not had to deal with all of this. I understand that paralysis is not as common if your AN is small. I am harbouring an unhealthy emotion and I need to move on but some days I am upset.
Blah blah blah I am talking to myself now, I need to go to bed long day. Good night. Oh Trish I am here for you PM me anytime for more information.
Michelle ;D
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michelle, my an was very small but very active and guess what I thought the same thing, surgeon even said its so small the your facial nerve wont be a problem here i am 4 mos later, the man with the melting face, i guess my days of chipndale modeling are over
yours in health bill
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Bill I won't lie some days are very hard and today I feel great... life goes on.. enjoy it we are here. It will get easier and things do improve. Take care Michelle ;D
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Hi Michelle
Glad to find that those little nerves of yours are doing their thing, however slow, and showing you that they are, in their own special ways. You are on your way baby.
I did share your frustration, as i am sure many here do... I also complained of hearing loss and tinnitus 3 years before my diagnosis. I have managed to get past this anger as I really like my GP and she was so nice after she found out, supportive and encouraged me to have surgery, which i am still glad i did. I also think that things happen for a reason, and who knows maybe things would not have turned out "so well" in my life these past three years (marriage, baby, being 5 months post surgery and doing well). I have put that part of this whole experience behind me and just as well, it would be a waste of energy and head space. I wish you peace on this.
I am getting some new eye glasses to celebrate the end of my DV and return to the world of seeing the world with both eyes open. :) I don't need glasses to see (mild prescrition only for distance) but figure they protect my eye a bit physically, and distracted from my facial issues too.
Hang in there and thanks. You too Bill ! :D
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thanks michelle you seem to always have a kind word and upbeat attitiude i appreciate that
thanks bill :)
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thanks calimamma , i never thought in a million years that i would ever be on a chat site, but you know what there are alot of nice people willing to share experiences,solutions,emotions and time who knew? you know what i think makes this problematic for me is despite the dizzies and the melting face, is that i am an icu nurse at a large university hosp in philadelphia, it sucks being on the other end of healthcare, but when i get back to work my hopes is to use my experiences good and bad a become a better nurse becauseof it
thanks for the ear bill
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Wow Bill, when you return to work you will have such a great understanding for how a patient feels. I am sure you were an awesome nurse before this but this experience can make you an even GREATER nurse. You will have walked the mile... that is a gift.
Sending healing vibes your way Bill.
Push yourself a LITTLE each day and before you know it you will look back and say "I really am amazing, look how far I have come". Be strong .
Michelle ;)
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Bill, I am now a retired nurse since this past spring but have NF2 so have had more than one surgery and back to work in 2 months. Both times I had facial paralysis also and it was a rare patient who mentioned it. One old guy asked how long I had had it as a way of asking about it. More older patients were happy to find someone with a hearing problem if I had to mention I had a problem due to how someone talked. I understood what it was like as many had a hearing problem also.
After going thru this,one does understand more how a patient may feel esp if they have a chronic health issue. My favorite pt was a lady my age with end stage liver disease and she was always happy when I took care of her. She was trying to improve to get a transplant but did not and died. Very sad.
Good luck with your continued recovery, Cheryl R
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thanks michelle thanks cheryl good to hear from you this morning, bad dizzie day, pulled out cupcake and lit the candle for my own private pity party, went to rehab later felt better( dont know what i would have done w/o my therapist susan) now feeling better but thanks for the positive vibs they really help blue out the candle partys over!!! back to healing and living
bill