ANA Discussion Forum
Archive => Archives => Topic started by: nannettesea on March 14, 2006, 12:55:25 pm
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Hello, all-
It's Nan again. To Rory, Cheryl, Deb, Debbie, Howard, Raydean, Larry--sorry if I missed anyone--thanks for all your support and replies to my posts....
I remember seeing someone's post about being permanently dizzy. Other than that, I've found no one in my category except those who had bi-lateral vestibular problems or other brain problems. Now 7 months post-op and dizziness no better. I've heard thru the grapevine it can take a year. I'm trying to hang on to hope that I'll be in that category. Doing PT, walking, getting out as much as possible. Trying to stay positive, reading some good books (I'll probably never read again once I'm better!), praying a lot--didn't do much of that before, but I am now!
My doc says only a more serious condition would keep me from getting better...a stroke, or other serious brain problems. My MRI shows nothing like that. I'm just finishing at the Mayo, bad experience with Dr. Driscoll there, other docs great but no other answers.
If ANYONE out there is still dizzy this late in the game, or has any other information or resources to offer, I'd be very appreciative. P.S. to Raydean--my doc says I don't have Meniere's because my symptoms are constant--with Meniere's, they come and go.
Thanks for listening,
Nan
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Hmm..interesting about menieres...I talked to a guy who had an surgery and that developed after surgery and he complained of constantly feeling dizzy...how strange.
Have you done vestibular rehab? I know they make me do eye exercises to help with the dizzy spells as long as I don't turn my head to fast I do ok. I know there are those of you out there making snide comments about my dizzy spells....sometimes they are like a blond moment only better ;D
Just think cruise and all your symptoms will go away...esp since you started that last thread :o)
speaking of books have you read any of the stepanie plum novels by janet evanovich? I guarantee you will laugh at least one good belly laugh a book...more than likely at least three good belly laughs with lots of chuckles along the way!
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Hi, Batty-
Sounds like you are doing better, have enjoyed reading your posts and all the talk of cruises. Unfortunately I got sick with this on my wedding cruise...sick since I got married, wish I could appreciate the humor in it--everyone else does!
So your friend with Meniere's was dizzy all the time? Do you still communicate with that person, or was it passing?
Have been doing vestibular rehab, no help at all. Have been getting slack with it as a result.
Thanks for the reading recommendations--will keep them in mind. I need to laugh!
Nan
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Hey Nan
3 1/2 years and I'm still dizzy! Only it's much, much much better. The thing that helped me absolutely the most was getting out and walking. I wish that I had had a treadmill, thoug--something to hang onto. I am able to go to the gym now and I do 3 miles on the treadmill there, but I still have to hang on.
I know this for a fact, you have to be absolutely persistant as hell about doing your exercises, which is a pain in the patoot. I kept a couple of playing cards around and just practised head turns and eye movements relentlessly. Sounds like you have explored reasons why you are having such difficulty, and barring some other physical problem, your brain should start to compensate.
I felt that PT wasn't doing much for me either, the progress was soooo slow.Don't give up, though!
Captain (Dizzy) Deb 8)
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Hi Nan,
Oh, batty is just dizzy, period! Have spoken to her on the phone and trust me on that one! ;)
Got sick on my post-wedding cruise... *coff* same as you. Got rid of him the following year! :)
Concerned as well as the vertigo is becoming more pronouced lately and although not having micro-surgery, am concerned about post-CK reactions such as dizziness/vertigo. Will monitor this thread for other's replies.
Phyl
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I still get dizzy when riding in the car and somene else is driving, it's weird. I get very dizzy walking into a dark room and cannot walk around and turn my head fast without "swaying". I wish I could go for a walk and really enjoy it. When I walk, I have to pay strict attention to what I'm doing at all times or............ well, I start to sway or stumble, etc. After I come home from a walk, I am so tight and tense, I feel like I would have been better off just staying home! Steps make me dizzy for some reason as well. I'm just over 2 years post op. Just living with the new way of things and trying to get by. I guess it could be worse! People that I work with and hardly know make jokes about my dizziness all the time and I just laugh and go along with it but sometimes it really hurts and people really don't understand what we are all going through. Hang in there and I will too! ;)
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does anyone find the dizziness to be worse when you look down towards the ground/floor? I've been running into that one a LOT lately. I can't look down anymore, even when walking... really throws me off -kilter.
Phyl
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Hi Nan - I was thinking it might be Meniere's  Disease too. When my son was in high school, his friends mom had meniere's. She was misdiagnosed for welll over a year. There were days that she could not get out of bed due to the dizziness and nausea. She ended up leaving her job. I know you have as well. Many mornings after I picked up her son, I would head back and help her out. It really sounds similar to what you have told me you are experiencing. I know once diagnosed she was put on a therapy program that included a restricted diet, no caffeine, low salt....I know she did suffer allergies which was also a trigger. She was put on medication and in conjunction with the rest of the program, she was doing fine. Went back to work and was able to get control of her life again.
I am also dealing with AN issues. About 1 1/2 years ago I started having hypersensitivity on my AN side that radiates down my left arm. My MRI shows no sign of a tumor. It has been 8 years since my surgery. the consensus is that my facial nerve is misfiring. I was told that it can continue to heal even this many years later. What is really weird is that I have always had the tight pony tail feeling on that side, but I don't anymore. I also feel like I am carrying a heavy weight on the side of my head. They want to put me on a medication called Neurontin. what I have read about it has made me decide I don't want to take it. As long as I know what I have, and it is not life threatening,(which it isn't) then I am good to go!
I am still dizzy, but not to the point where it is debilitating, like it has been for you. I am sorry it didn't work out for you at Mayo. I just know that there is someone out there that will be able to help you.
I am keeping you in my prayers
Take care,
Cheryl
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Nan I haven' talked to him since my surgery. His wifes school is one of my clients and I know he's more than willing to talk, email and share his knowledge. He's a very nice guy. I'll make contact with her and pass on the info. Maybe he'll know something to help.
The humor on here is the only thing helping me get through a depressing, scarey, horrible situation. It's about the only contact I have with real people who aren't too busy to listen and care. It also helps hearing I'm not alone in all this for a while I felt so isolated in trying to cope with the after math of surgery. Each and everyone of you have helped me in some way...and like phyl Im truly grateful!
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Boy I'm so long winded tonight I just can't shut up. (how long will it take phly to comment on that one? ???)
I have more trouble looking up than at the ground when walking.
I was told by the ENT that your brain uses three areas to help when going from light to dark and after an surgery all three things are compromised. So he suggested to put a small flashlight on my key chain or in my pocket to help with walking at night, going into a movie theater etc....
ok, the phone rang and now I dont' remember what all I was going to say...oops :-[
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Me too battyP, I always have to look down when I walk. Can't tell you how many times I didn't see cars coming my way. Can't hear em or see em. LOL! I must have a guardian angel.
matti
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Thanks to Batty, Cheryl, Phyl and Deb--for your posts.  I feel so alone with this.  I stopped the forum for a while cause I got too depressed, thinking there's no one else out there like me....
I find it worse looking up/down, too.  Static, thanks for the comments about walking.  I am constantly deep breathing in order to avoid getting anxious while walking or standing.  Though I don't struggle with balance, the dizziness is overwhelming.  But the fresh air is good for me,  I know.
I am in the angry mode today.  Why me, why not getting better, I feel like crap all the time, not a moment without this dizziness.  If it was Meniere's disease, at least I would have an ANSWER.  Pre-surgery I had a rocking dizziness, not nearly as bad as what I have now.  If I had known this would be the outcome....coulda woulda shoulda.
Phyl, hope the vertigo subsides.  I hear dizziness can occur after radiation therapy, but should be temporary.
Thanks again for listening.
Nan
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Static,
When did you go back to work after surgery? I tried after 8 weeks, worked two months half time, think it made me sicker. Had to quit altogether, applied for disability.
How is your concentration and anxiety levels? That, and my fatigue, make me unable to work.
Just talking to you guys helps, esp days like today. Now that I'm on anti-depressants, my doctor can't tell me it's all in my head. Hahahahaha.That's what they used to tell women in the old days. You're hysterical, housewife's syndrome. Oddly familiar!
Nan
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Nan, you are not alone hun. I know it's been a "not so good" day for you (is that putting it mildly?) but know that we have oodles of huggles for you! My vertigo, pfffft! I'll deal... and as for you... you're stuck with us, whether you like it or not! :)
xoxo
Phyl
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Nan we all have our own issues so you are not allowed to leave us again!
No matter what someone is going through we are here to support you, brainstorm ideas/solutions, let you vent, yell scream whatever it takes to give you some relief from your symptoms if even for a little bit.
I remember how frustrated I was when I first signed on in November. 2.5 mos post op and was told piece of cake surgery back to work in 3 to 6 weeks. Yeah right! I'm in the process of applying for disability with social security and looking to be retrained for a new career and was told MAYBE I could be trained. Ouch!
We know it's hard and we know some of us walk away unscathed and some of us don't fair as lucky but we all made it so far and will continue through this journey together!!
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Nan,
You will have to join the cruise together with those other mad monks out there! if that doesn't help you through a bad day, nothing will. Agree with batty - you are well and truly part of the team so get in there and play hard.
Re the dizziness, I am 3.5 years post op, luckily, no facial or eye problems but still get dizzy. On a walk, I have to look down. If I gaze into people's houses (name isn't peeping Tom either, maybe leisure suit Larry but not peeping Tom) I will wobble a fair bit.
Now Phyl, I could tell that you are as mad as a hatter from your 5 million posts, (lol) but why are you the only one that gets dizzy when looking down?
Larry
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Good Morning. I am not permanently dizzy. But I do get dizzy going up and down small inclines and when the carpet is a busy pattern. I go to the Y and the treadmill, I have found is the best thing for helping me. Also, when I walk outside, I make sure someone is with me so I can look around.
On the treadmill, I hold on tight, and look left, center, right, center, left center and keep repeating. I stop moving my head when i start to feel nauseous. The more often i do this the longer I can do it without getting nauseous. I am slowly improving. :-\
Denise
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Nan,
My surgery was in January '04 (I didn't have a job at that time, had just left one around May of the year I was diagnosed), had a CSF leak repaired the May after my surgery then took the summer off so to speak. I applied and started a new job that same November ('04). I did ok, had lots of trouble hearing and the people I worked with just didn't seem to understand that I couldn't hear when I was on the phone and had a hard time hearing in general (imagine that). Moved to a new job September of '05 and have run into many similar situations. I can't concentrate when there are alot of things going on around me and apparently that is an issue with my employer. Just have to learn to try and cope, I do need a job. Hang in there!
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Concerned as well as the vertigo is becoming more pronouced lately and although not having micro-surgery, am concerned about post-CK reactions such as dizziness/vertigo. Will monitor this thread for other's replies.
Mine got much worse after radiation (even fell a few times) but Bats is right, it was only temporary. I'd say within two weeks it was back to the way it was before the treatment.
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Thanks EVERYBODY for replying and being so supportive. I really needed to hear from you. Everybody has unique experiences, but total one-sided vestibular loss affects us all. To the gang and Larry, you're a hoot. Larry ought to post a picture with his leisure suit.
Static, sorry about the trying times at work, and Batty, I've applied for disability, too, as you can see. One of the real shifts I'm having to make is that my value doesn't lie in working. I was a workaholic, and my self-esteem was really tied up in that. Not to mention not having any income--my poor husband, but he's been a real trooper. At least I have someone to help out financially.
Batty, if you find your friend, appreciate it if he will let me contact him.
Sounds like I just have to keep pushing myself, esp to exercise. What happens is, I push, then I collapse the next day, very predictable. So it's like I pay for trying hard! Will be upping my anti-depressants soon, so that should help.
Thanks again,
Nan
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The reply from Battyprincess about going from light to dark was really interesting, because I notice that the most. When I go from shade to sun or sun to shade, i get loopy! Not so much indoors, but definately outdoors. I live in Las Vegas (lots of sun), maybe I should move somewhere more gloomy. Anyway, I had GK with bad vertigo as an initial symptom.
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"maybe I should move somewhere more gloomy"
The Pacific Northwest has been pretty gloomy this year, We'd be glad to have ya. <g>
Raydean
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Why thank you Raydean. That's very kind. I should check it out when it's too stinkin hot for words here in the summer!
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Nan,
I'm not sure if you want to see me in my leisure suit. In fact, I know you don't. Mind you, they say that shock treatment is a good cure for things, maybe it would shock your brain into submission and you wouldn't have vertigo anymore!
Larry
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Phyl,
I had CK almost 3 months ago. Not dizzy. Just balance change. Balance did not get worse, just different. Some facial numbness that comes and goes. because my AN is close to the trigiminal nerve. Nothing bad at all so far. Haven't missed a day of work and I work about 9 to 10 hours a day and drive 45 minutes each way.
I also have cochlear hydrops, a form of Meniers Disease in my only remaining hearing ear. Also Autoimunne Inner Ear Disease which may be related to the Menier's. Menier's is usually accompanied by fluctuating hearing loss, sometimes fullness in the ear and tinnitus. I did have the feeling of almost having motion sickness. I am now on a 1500 mg salt reduced diet and the feeling of motion is gone and so is the stuffy ear feeling.
I can't walk in a streight line now. Couldn't do it before CK. I am still out there buying shoes and hitting the casino once in a while. The only thing that has really changed is my stress level. The relief I feel because I got off high center and had treatment is the biggest plus. I find that I do get tired a little easier. Of course I have read that having a AN=fatigue, loss of hearing =fatigue, radiation=fatigue, and imbalance=fatigue. I refuse to believe it could be AGE syndrome.
Blessings,
Sandy
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I"m thinking we should all go visit minnkris in vegas to eliminate our financial woes and as long as we stay indoors we'll all be fine from dizzziness. What ever would we do indoors in vegas..hmmm...
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I'm almost 7 years post-surgery. Dizziness was my only symptom when I finally got diagnosed with the AN. I was afraid I'd be arrested for drunk driving & couldnt walk a straight line to save my life. Anyway, I still have days & sometimes weeks at a time when I feel this same kind of dizzy/wooziness. It was really bad for the first 5 yrs. after surgery, but it has gotten better in the past year. I'm glad it's finally getting better since I'm having surgery April 7th. to have the same tumor removed again. The worst & most bizarre thing that ever happened as far as my lack of balance is concerned happened about a yr after surgery. I was getting ready to go out & I bent down to look in a mirror & I fell over & my arm landed on my burning hot curling iron. My husband had to lift the top half of my body up (I fell on the bathroom counter) & I ended up with a horrible burn & a memorable scar. I tended to fall forward for some reason. I am tired of feeling dizzy/woozy - maybe I have some other illness that's still causing it, but I don't know what that could be & neither does my doctor.
Kathy
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Maybe after your cruise, you should plan a trip to Vegas! I was kidding about moving, I love it here, cause I'm crazy!
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Nan, I can understand what your talking about regardingyour "value in working". My job requires me to do things I know I can do but guess what? I can't do them anymore. My concentration is horrible, it's so easy to get side tracked especially when so many things are going on around me at once. Sometimes it makes me feel very stupid but I know it's not "normal" for me as much as it is the "new normal" for me. Not liking it so much and want to hang on to my job as I can't see ever being approved for disability. With my family dependng on me, (my hubby works as well but we need both incomes), losing my job because of the new me is a very scary thought :-[
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Larry, hey, I'd try anything--shock from a leisure suit, anything!
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Static,
I know what you mean. I don't know if my concentration will ever be like it was. I went back to work too soon, so much anxiety and fatigue--have applied for disability, but don't know what will happen. There's no way I could work full time right now.
I hope your boss cuts you some slack. I'm sure you don't want to bring too much attention to yourself, risk your job, etc. That's so scary.
Nan
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Sandy,
I loved that statement of An=fatigue, etc. I am tired all the time.
Nan
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does that tired all the time feeling ever get better? I want to sleep all day then can't sleep at night and the littlest activity wears me out!
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Yes, Batty, believe me it DOES get better.
The recovery from this particular sugery IMO is one of the most horrendous of all recoveries! Losing that balance nerve and the adjustments, both physical and cognitive, are beyond most folks comprehension. I truly is like waking up with a new body. After three years my head just feels weird all the time, but it really does get better--usually in big chuncks.
I still have days of NO energy and I have learned just to give in to them and not beat myself up for not "doing better." Sometimes I think it might be easier losing a leg or something!
Captain Deb 8)
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I am almost 8 years out and I'm still tired. Leaned to pace myself, do too many things and I get frazzled. Multi-tasking takes a little bit longer these days, but it gets done. I love to cook and entertain, since AN, I know that I have to start a little earilier and keep telling myself, it's OK to ask for help. I am a type A personality and somewhat of a control freak, bugs me that I can't get hold of this.
Always wonder if this was God's way of telling me to slow down. I got the message....
Sorry my post sounds so depressing, it's just been one of those days. :(
matti
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Fatigue is still a great big biggie for me and it's been over 15 years. Before I had children I had the luxury of sleeping as I needed (except for work hours) and since having my children most days I feel like I'm just dragging myself along. I have had period of this not being as bad as all that. There has never been any other reason for this fatigue found on medical check up's. My parents appear to be more energetic than me! Kathleen
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Matti we are so insync it isn't funny!
are all virgos control freaks? No I think it's more a perfection thing..no one can do it as good as I can lol ;D
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Actually, that's one of the "virtures" of Virgos....that we are "perfectionists". Having to have lab partners in school was very hard for me. I'm definitely hearing the loud voice of someone screaming at me to slow down and take care of myself. I didn't listen before, but it's got my attention now. I read these threads from those of you that are post op and really wonder where my life is going to go. It obviously isn't going to be the same even if I am lucky enough to squeak by with minimal side effects. And until you have the surgery you just really don't know what you're going to get, and how in the heck is a Virgo perfectionist supposed to deal with that?
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gennysmom I'm still trying to figure that one out :-*
I hate asking for help, I hate accpeting help, but right now I so need help it isn't funny! When I try to do things I used to do with no problem I pay for it for days.
You'll def. have a new normal to get used to...I'm praying it won't be a problem for you!
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what is it about us Virgo's and asking for help???? I also hate it when I have to work with someone and if at all possible find things that allow my to work alone. My poor husband can't do anything right or at least not to a Virgo's standards. I'd like to walk into a room and not pick out every little flaw I see and then want to go and fix it.
Gennysmom - good luck tomorrow at your doctors appointment. (I think you said it was this Monday) Sending good and perfect Virgo thoughts your way!
matti
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Forrest Gump was RIGHT, you sure never know what you're gonna git!
It's not just Virgos who are perfectionists, either--or control freaks! I have learned thru this experience to just take each day as it comes and be grateful for small miracles--like having a pain-free day!
The apprehension I felt between diagnosis and treatment was almost worse that what I experienced post-op, that is until the migraines kicked in. But they kicked back out again and TODAY I don't have a headache, or dizziness, and most days I feel pretty damn normal except for a weird feeling in my head that I'm getting used too. Remember, Gennysmom, that just a small percentage of us get headaches.
Rock on wenches!
Capt Deb 8)
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Funny, I don't think your zodiac sign has anything to do with being a perfectionist.
I have been reading People Smart (a book) and your personality traits determine if you are a perfectionist. Don't Blame it on the Stars! Ha ha!!
D
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And it's funny how the dates in the newspaper tell me I'm an Aries even though the sun was in Pisces when I was born.
So am I: Adventurous and energetic; pioneering and courageous; enthusiastic and confident; dynamic and quick-witted; selfish and quick-tempered; impulsive and impatient; foolhardy and daredevil?
Or am I: Imaginative and sensitive; compassionate and kind; selfless and unworldly; intuitive and sympathetic; escapist and idealistic; secretive and vague; weak-willed and easily led?
Or am I a perfectionist? :P
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Kilroy,
The world may never know,
like with tootsie pops and how many licks it takes to get to the center.
D.
at least you have some options.....
according to the book my personality is only dominant in 5% of the population, and i don't think its in a good way....
D
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I don't know about just virgos being perfectionists because one daughter is a libra and the other a scorpio, they are both perfectionists and I am told they get it from me (I'm a scorpio also). I think it's just your chemistry and how you were brought up and things in the stars, as much as we are all looking for something, somewhere, to give us answers, are a coincidence. I read my horoscope whenever I see them so I'm guilty as well. Stayed home from work today to get over the after effects of all the noise at the concert last night and have had a migraine all day (also a toothache, going on Thurs for that). The concert was worth it though. The headaches will go away eventually but that memory will last for quite some time! This weather is horrible, March sucks. We need some warmth already. I think the dry air from the heat running all the time isn't helping my headaches either, my head is so dry and my nose bleeds because it is so dry. Ok, so what was my point........oh well, hope everyone is having a great day! :P
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Static,
I have found that the Good Morning thread is great for headache relief, how about writing episode 5?
Laz
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Static - Sorry about your headache, but who better to give you one than Billy Joel. I bet it was an awesome concert.
I use a saline nasal spray and I find it very helpful with the dry air from having the heater on. I live in California and it has been raining for way too long, I am sick of it, although I will also be complaining during the summer months when it's 95 -100. >:(
Hope you feel better
Larry - I thoroughly enjoyed my read last night....Can't wait for the next chapter.
matti
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GROOOAN. It's nice and warm here, and I took advantage yesterday by doing yard work. Now I'm paying for a clean yard with dirty back pain. I'm telling you all, if you ever just want to forget about your tumor for a while, your back can show you how. Owieowieowie. :-\
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Kilroy I did the same thing Sunday. I'm still hurting and it's wedsnesday!
Matti we're in the 80's already with no rain in site. It hasn't rained here in about 3 weeks if I remember correctly. Which is good since I'm not suppose to drive in it ;D
Kilroy I don't perciecve you as easily led...unless it's by a leggy blonde, brunette or redhead lol ;D