ANA Discussion Forum
General Category => AN Issues => Topic started by: Charlotte Lady on November 02, 2007, 08:00:10 am
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Hi
I"m new to the forum. I had surgery 9/25/07 for a 1.5cm NA on the right side. I'm deaf on the right side. I have some small degree facial paralysis which showed up a week after I was home (two weeks after surgery). Most vexing is the eye tearing a lot.
About me...I'm in Charlotte, NC. I work as an department manager in a major bookseller. I am blessed and/or cursed with an inappropriate sense of humor.
I and my coworkers spent the two months up to my surgery looking for bad haircuts for me post op. The mug shots in Smokinggun.com were most "helpful". That was so much easier to do that than thinking about what was going to happen. It also prepared them I might have a unattractive hairstyle when I returned to work. In reality, very little of my hair was cut. I was almost disappointed... almost, mind you.
I return to work next Monday 11/5, a little nervous. In the middle of all the AN workup, I got a promotion. So on top of the AN and SSD, I'm going to a new position. It should be another challenging two months (the holiday season in retail in a new job).
Donna
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One needs a great sense of humour, guaranteed. One colleague asked me once when we were having coffee, 'one lump or two?' I only drink black espresso. I think I eventually stopped laughing, can't remember how though. The best part? That was said without thinking too much about it. I'm seriosuly thinking of making a t-shirt out of that one, no disrespect to anybody.
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Hello Donna,
Welcome to the forum. I'm in the Raleigh, NC, area. There are several people from NC on the Forum. There is a local ANA chaper in Durham that meets quarterly. And I heard that someone is starting a local ANA chapter in Charlotte as well.
Hopefully your facial issues will continue to improve. Having facial function imediately after surgery is good, it means that the nerve was not compromised by the surgery. Perhaps post surgery swelling is a factor. Some people on the Forum have reported post treatment tearing issues. It seems that as the facial nerve heals, and new nerve hookups are made, that thngs can become cross connected. It's not uncommon for people to report that they have excess tearing on the AN affected side while eating. Or sometimes when you smile, the muscles around the eye on the AN side can tense up. In some cases people seek physical therapy to help retrain facial muscles.
With your sense of humor you should fit right in a round here. Forum members often post humorous items in the "Good Morning" tread in the AN Community section. Not everyone's cup of tea, but I find it entertaining.
Good luck on your return to work. And it's great to hear you're doing well. Many report that they are extremely fatiqued when they first return to work, so try to take it easy. For the first week after I returned to work I pretty much went to bed as soon as I got home.
Regards,
Rob
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Charlotte Lady,
Welcome to the forum. A sense of humor really does help. I find myself laughing at things related to my AN that other people don't seem to find as humerous. As someone considering surgery here in the near future, I'll have to check out the site for haircut suggestions. ;D
Good luck as you return to work and congratulations on your promotion. The thought of working retail during the holidays makes my head spin. (A little AN humor)
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Okay. I'll admit it. I am DYING to say "I need that like I need a hole in my he...oh never mind"
Donna
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that's an old one, need to come up with better than that! :D
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Hi, Charlotte Lady:
Welcome to the forum. :)
I'm pleased to learn that you had a successful surgery and seem to be recovering at a normal pace. The eye tearing is a nuisance but probably no more so than 'dry eye', which is more common following AN surgery (I still have it, on occasion). It should resolve, in time. Post-op facial paralysis is also common, in varying degrees. Fortunately, yours is mild. Another post-op complication that should eventually resolve, as most post-op complications eventually do. Well, most all.
The fact that you're returning to work within 10 days of your surgery speaks well for your recovery. You'll find the SSD is a challenge, especially in a work environment, but one that is surmountable. I'm sure you'll do fine in your new position. Let us know.
Jim
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Oh come on Lorenzo ;D … you are not laughing because you had “the zap� vs “the hole in the head� LOL. HUGS
I still think the post-craniotomy joke of “I need that like I need another hole in the head� is still hilarious …no matter how many times I read/hear it. :D
There must be some ole “zap� jokes out there with you radiated folks. Tease LOL In the USA, here, they don’t offer you coffee and tea with “one or two lumps� (just a to-go cup in this “fast food nation�) … however next time around my European friends and family and they ask me “One lump or two?� I am going to absolutely crack up … LOL :D
Charlotte Lady – sorry for the reason you joined us crazy lot… but welcome to the AN family. A book lover no doubt if you work in a bookstore … Retail business just before the holiday rush- oh-ya-ya ::) … However I am so glad another has joined us who has a sense of humoUr!
Lorenzo is working on a fabulous (top secret) 8) exquisite photography book that I am optimistic might be published here in the USA "if" he gets onto it …while he is visiting the Stanford experts (here in the “Excited States�.) Even those Starbuck coffee-aholics may be found viewing it in one of those Barnes and Nobles (partnered with Starbucks of course) type stores.
Do you work in an independent bookstore or one of the big giant corporate franchise ones?
Did you ever see You’ve Got Mail?
http://en.wikipedia.org/wiki/You've_Got_Mail
I personally am a big fan of children’s books – particularly ones that are beautifully illustrated. The folks in the Barnes and Nobles (aka FOX books) children’s section need to work on reading more children’s literature – as they just are not as in-the-know as the dear lady who had to close down her small independent bookstore in the little town closest to us. (My children cried when our local book store closed)
Oh dear (sock in my mouth) you aren’t a B & N employee are you? (tease grin :D )
If you had paralysis show up only days after surgery - chances are your facial palsy will resolve. I am at 10 weeks post op now and I and can close my eye now without the temporary eye weight (as of today!) … improvement happens however SO slowly. The eye watering (or lack of) makes reading books a pain – but it does improve. My face is still palsy – now they are saying 7- 9 months. I am an impatient ::) patient…
Welcome and Oh -be leery of the pirates on the ANA forum ship … they are weird, wacky … (These will be the ones on the PBW ship sailing alongside on their own journey)
Laughter is what keeps one sane in this AN journey.HumoUr can be healthy if kept into persective.
Again welcome aboard the ANA journey ship!
4
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How about: I'm turning a deaf ear to your request? or I'm listening with one ear?
I do plan to tell my boss, the fastest talking man in the South, that since I have only one ear I can hear only half as fast :)
Oh and yes I work at B & N and I have seen You've Got Mail. I loved it.
Donna
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Very Punny!
My favorite book about getting society to read to children is this one
Aunt Chip & the Great Triple Creek Dam Affair
http://search.barnesandnoble.com/booksearch/isbninquiry.asp?ean=9780399229435&z=y
Maybe pull it off the shelf during your break as you sip a starbucks.
SOOOOH are you a coffeaholic too?
4
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Yippee 4,
I'm so glad you glad you can close your eye. You are too funny. A girl after my own heart. I'm a very impatient patient, myself.
Leave Lorenzo alone.....the only way to truly enjoy and appreciate an espresso coffee is to drink it black. You know the saying girl. Once you go black, you never go______ ;D!!! Try it some day.
You Got Mail is a great chick flick!!
Hey Charlotte Lady, can you get us any good deals on books? I love to read. Welcome by the way. We are nutty, but lovable.
Anne Marie
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Hi charlotte lady
Welcome, you've got to have your sence of humour or you'll end up thinking everything that everyone says is directed at you, when I'm talking to people about my AN I'm always saying things like "its always at the back of my mind" or "I can't get the thought of it out of my head" this is usually followed by a giggle and a "sorry bad pun" at first, saying things like that mad me cringe but now I just see the funny side.
I'm having my surgery on 9th november so not long now I just hope I can keep my sence of humour going!
Take care I'm glad everything went well.
cheryl XxX
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One colleague asked me once when we were having coffee, 'one lump or two?' I only drink black espresso.
:D
Steve
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Hi Donna,
I live in Charlotte too! Just wanted to wish you well and let you know there is a local ANA group here if you're interested. Well, we had one meeting during the summer anyway... not sure when the next one is. It was my first time to be in a group and talk with people who actually know what the whole AN experience is like, so that was really helpful. Hope there will be more to come.
Welcome and best wishes with your recovery,
Jay
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CAN YOU HEAR ME NOW !
been waiting to use that one.
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Satman super “8� ;D
“Well not if you say it while walking away from me outside the room!
Look at me when you are speaking to me then I can hear you!�
Sound familiar? LOL ;)
Cheers,
4
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Good morning 4,
You are always on top of your game,
Sounds to familiar, kind of like "just be patient".
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JB-
I'd love to join a support group. Let me know details, if you have any. How'd you hear about it?
I know there are several folk out there in Charlotte with AN. Dr Gold/Dr VanderVeer did three before me this summer. Were you one?
Donna
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Hi Donna,
I ended up going the radiation route. Got my AN zapped up at Georgetown in DC. I have family and friends up that way, so it worked out pretty well. Still dealing with some side effects like everyone else.
How did you like Gold and VanderVeer? They seem to be a popular choice. I'm looking for a local doc to follow up with since my treatment.
I got a notice in the mail from ANA prior to the Charlotte meeting this summer. I just emailed the lady that set it up last week, but haven't gotten any response yet. I'll be sure to send you a PM if I get any info.
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Donna,
Glad you're sense of humor didn't leak out during your surgery! But hey, on the flip side......you mentioned watering eyes and I remember that one. My optometrist mentioned to me that watery eyes means dry eyes. They're overproducing to compensate for the dryness. I use GenTeal Gel at night and during the day, but the amount put in during the day is small as this tends to cause blurring for a bit. Other people have used drops, but depending on how dry they are one has to continually drop the drip vs the gel form that lasts longer. Good wishes to you.
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Hi everyone, I am up in the cold north of Canada, have had 3 aud. tests with hearing loss right side, plugged sensation, numbness and pain. Have MRI this Monday Dec. 3/07 at 8:00 p.m. and appreciate the information here. Am terrified of course, and keep trying to remember what a former boss of mine said "all the worry in the world won't cahnge the outcome" .... so am just trying to keep going. My ENT was a *** at the first visit, and fluffed me off but I persevered through it and demanded another visit at which I blasted him for his previous attitude (I remained calm while blasting), and expressed grave concern at not being taken seriously. He was so upset that he had come across that way... anyway, he did some tests ... I could not keep my balance, was able to explain the swallowing problems and was taken seroiusly. This doc is the HEAD of our ENT department too (I work in the hospital system here) ... so I was glad to see a change of attitude, and now know that if the MRI does show an ANA I am to ask for a neurologist specializing in this surgery. My followup appt. with the ENT is December 11th so I will post again after that. My aud. said that the tones I am losing are not consistent with her experience with tumours ... but everything else points to this.
Thanks for listening - Susy (aka Scared in Ontario Canada)
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Hi Susy. We will definitely be thinking of you on the 3rd when you go for your MRI. I'm glad you stuck to your guns and demanded to be treated the way you should be treated - and not ignored! It's normal to be scared when it's your head in question. I think every one of us felt that way.
It seems to me that the only consistent thing with AN's is that the symptoms are inconsistent. I'm glad you're getting the MRI done - make sure it's with contrast. I will keep my fingers crossed that everything comes back fine. Please let us know how it turns out.
Lori
p.s. I'm afraid to ask HOW cold it is in Canada right now! It's cold enough for me in Tennessee!
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Welcome Susy,
It is amazing how many of us Canadians come to the American forum here … currently I am residing here and was fortunate to have finally located some good honest and sincere doctors here in the USA who had “the patients� best interest truly at heart (one even a Canadian :) ;) ).
Before you reinvent-the-wheel on the “searching for surgeons� thing know that there in Ontario you have some of the world’s finests right there in your snowy and cold back yard.
“If� it is an acoustic neuroma I suggest that you skip past the ENT and connect with a "neurosurgeon" and a "neurotologist" (worth speaking with both- as those are the best qualified to do this sort of treatment… and can help you choose your options. (Some AN patients have more options than others based on size & location of tumor... and their overall health, age etc...)
Here are a couple of world class reputable surgeons you may want to approach … again… “If “ you show positive for an AN.
(I will add you to my prayer list that it will not be positive)
Julian M. Nedzelski, M.D., FRCS(C), Otolaryngologist-in-Chief
Sunnybrooke Health Science Center
U o T former Chairman of, the Department of Otolaryngology,
Faculty of Medicine, at the University of Toronto.
Sunnybrook campus
2075 Bayview Avenue
Toronto, Ontario
Canada M4N 3M5
Telephone: 416.480.6100
I suggest that you speak with your ENT and see if they can set up an appointment for you with Dr. Nedzelski and ask him to look at your case – specifically.
http://www.sunnybrook.ca/departments/ent/healthteam
You will see he is world renown for his expertise in AN -on this list
http://www.ncbi.nlm.nih.gov/books/bv.fcgi?rid=hstat6.section.55342
Another top notch world renowned surgeon is at University of Western Ontario Medical School:
Dr. Lorne Parnes.
http://www.uwo.ca/ent/BIOPARNES.pdf
( Schulich Department of Otolaryngology) 519-663-3421
http://www.schulich.uwo.ca/ent/
Know that by being an Ontario resident you are in a good position- being that some of Canada’s best resources, doctors, and facilities, equipped to deal with Acoustic Neuroma, are actually right there in your province. (I won’t even start on all the out-of-pocket expenses occurred over my AN research – many Americans choose treatment options based on financial resources and insurance … you have a health insurance coverage that many Americans do not have). Trust me if you have OHIP- you are at an advantage up there.
Acoustic Neuromas are not typically fast growing – and know that you can take time to understand what you have, what are the best treatment options FOR YOU (every case is different) … and on this forum are some great understanding people. Know you are not alone and there ARE people there for you- we all just happen to reside in different geographical locations and the forum is what brings us together. (What did AN’ers do before the internet?)
Once you find out what the prognosis is -after the MRI (as to not overwhelm you) I can direct you to some more resources (alongside others on the forum).
I can tell you that by finding this ANA forum here -you are already a step in the right direction.
4
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Hi Suzy,
There is also Dr Rutka at the Toronto General. He is a neurotologist. That's who I see and he is excellent.
I hope they are going to use the contrasting dye when you have your MRI on Monday. I will be thinking of you.
Lori,
Today in Southern Ont we had snow streamers of Lake Ontario and it was -3, windchill -10. Chilly to say the least, but it will get colder before it gets warmer!!!
Anne Marie
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Oh, that's cold. That's beyond cold. It's funny to think my grandparents came from Canada. I don't think I inherited any of their genes! :o
I grew up in the Northeast, but live in Nashville now - it's funny to watch the whole city shut down because of 2 flakes of snow.
And once again Susy, good luck Monday!
Lori
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BRRRRR!
Warm hugs to my fellow Canadians!
Anne Marie, I forgot about Dr. Rutka you had mentioned before. I was not sure if he was a neurotologist or a neurosurgeon…
Here is the phone list by name
http://www.utoronto.ca/otolaryngology/faculty/faculty-alpha.htm
4
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Hello everyone, and THANK YOU. My ENT is also an otolaryngologist, and again, head of the hospital department here, and he wants me to come back to see him on December 11th (next Tuesday) and HE will give me the results of blood/MRI tests AT THAT TIME. Now, are you saying I can ask tonight after the MRI what the results are? i highly doubt they will give them to me (and I have a call in about the contrast) then and there - and the waiting will be sheer agony.
I am very grateful for the physician/surgeon information in southern Ontario - especially Toronto area. Nothing seems to feel "right" at the present time, truly so many have you have been through this and come out the other side a bit weary but intact. I won't mind having some permanent hearing loss, I just want resolution. Today I am nervous of course, and my ear is ringing in a high pitch frequency, and I can't stop choking up, my swallowing has been the worst this weekend, with spasms going right through to my back.
Enough complaining - we had a small blizzard hit us where I live, couldn't get doors opened, and then a nice coating of freezing rain. After hours of snowblowing and shovelling, a pleasant RAIN STARTED TO FALL melting most of it ... sigh. Such is life.
Tennessee?? It is lovely, I have travelled all across the states and loved every minute of it, but I simply cannot take the heat even our Canadian summers are unbearable, I don't have an exotic bone in my body and should be wearing viking horns on an ice floe. Hmmm - sounds like fun at this point in time ... will report back tomorrow. And again - thank you from the bottom of my heart for your support and knowledge and sharing. ::)
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Hi, popping back in - talked to the MRI department and NO CONTRAST is being done. She explained that that was the Radiologist's decision, he received the requisition from my doc, and made this evening appt. for less serious cases ... and that if once he reads them - they would decide if a daytime MRI with CAD could benefit me ... so there you go. The radiologist made the decision based on the information provided by my ENT Otolaryngologist .... again, will report back tomorrow - they will NOT give me any information today, that strictly has to come through my ENT OTO at the December 11th appt. - it will be read and ready for him within 10 days.
UGH - Susy :'(
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back again, had MRI monday night, got a call to come back for MRI with contrast dye and a CT scan on thursday. went back on for those feeling sick. nobody will tell me anything until the 11th - and the MRI took about 45 minutes as they had the radiologist reading and asking for more shots. i am hoping it is the earring i lost in 1985 ...
will report back after the 11th. weird thing was the tech who did the IV was all friendly beforehand, after he wouldn't make eye contact and spoke to me as if i was deaf - again, ugh. but will wait and see.
susy :-\
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Hang in there until the 11th.
Try to have some fun this weekend and forget about it until you hear (I know that is hard)
We ARE here for you.
4
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I hope it is that earring too. :D
The techs are under strict orders not to show any sign or say anything about the result of an MRI, so that behavior doesn't mean anything, even if it is a bit disconcerting. I think my MRI with contrast took about 45 minutes as well, mainly because they did one whole set, pulled me out to put in the contrast, then put me back in for another set.
Just a couple more days...
Steve