ANA Discussion Forum
General Category => AN Issues => Topic started by: mindyandy on December 21, 2011, 06:02:01 pm
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Just trying to keep in good spirits by posting how my walk is like a drinking walk. I find myself having to concentrate to walk a straight line. My shoulder always bumps the door jams. Night is horrible. Lol I find it funny. I don't have to drink to feel drunk.
any funny balance stories?
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You are so correct about walking. Many of us myself included could not walk a straight line if your life depended on it. In the dark it is worse because believe it or not your eyes are part of the balance system. So if you can't see it throws off your balance. The other night I turned to quickly and fell on the floor. My Grand daughter just yelled out Grandpa fell again! It is not a habit, but I have fallen 4 times in two years.
TJ
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OMG! Me too. It has gotten a lot better..there was a time when my husband and I would take a nice long walk on the streets of Manhattan, as crowded as they are, and every few feet he would put me back on track as I would be swaying all other the place. Although there are many mornings, as I am walking to my car, that I am still swaying like crazy and think "the neighbors are going to think I'm drinking my breakfast" but on a serious side I have seen many posts on this and most are from the CK gang. My side effects have lessened ( 1 year post CK) but they still pop up. Most current is my inability to put a sentence together or even to remember what I was going to say in the first place. I really have to think about the word placement. Hoping all this gets way better. Happy Holidays and continued Good Health to all in the New Year. JLR
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Thank you for chiming in. JRL I agree about the whole word finding thing. I find myself feeling like I'm just not as smart as I used to be. I know that's not true but sometimes I feel that way.
Glad to hear other people's balance stories ;D
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I was unhappy enough about the Drunkard's Walk, that I got a letter from my neurosurgeon documenting that I have a brain tumor resulting in specific issues (balance issues, SSD, and other things) and I keep a copy in my truck in the off chance that an officer sees me staggering through a parking lot in the dark.
In the first months of recovery, if I closed my eyes while standing, I fell over immediately. This is not uncommon. In our vestibular system is impaired, we have to learn to compensate, and much of that is visually. Within six months I was much better.
-Tod
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This is just what I was looking for,as now I have had balance issues and dizzy the last 2 days and one night when I stayed up late.I havent gotten treatment since I found out 6/2011.But now I will because I am scared that I will stay this way.Could that be true I am so frightened,this is worse than deafness!
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Hi Teripo, I'm guessing its all in the process of healing from the radiation. Even though CK is low dose and it is fractionated...there is no way the radiation could'nt affect us in some way. As it took the AN to grow so slowly ( in my case it was over 10years) it will take a bit of time for the effects of the radiation to leave our bodies. Stay strong! JLR
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Glad I'm not the only one walking like a drunk and I haven't had any surgery or radiation! I did have Vestibular Testing Tuesday which did NOT :( go well for me. I got so sick I couldn't finish the test. Took me about 8 hours before I felt slightly normal again but since that test I've had vertigo which I didn't have before & imbalance is way worse. Doctor's office finally returned my calls & said it's not the test it's the tumor (stupid) & should subside in a few days or a few weeks. Thanks, I'll be seeing the doctor in a week. Any way, the past few days I noticed that when I turn a corner I keep going & almost bumping into walls & door jams. Getting out of the car is bad too. I did get some Sea-Bands those seem to help, maybe purely psychological though. I like the idea of a letter because I thought the same thing if I were stopped it could be embarrassing.
Karen
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I don't have to drink to feel drunk.
I would say "I can drink I won't feel any drunker (is this correct English?)"
Don't get me wrong I never used to drink because the slightest drop of alcohol would really trigger bouts of dizziness, now I can enjoy a glass of champagne, it doesn't make any difference at all! >:D
I love this thread!
Joey
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Very interesting.
"Most current is my inability to put a sentence together or even to remember what I was going to say in the first place. I really have to think about the word placement"
I had this before treatment and its to do with a damaged balance system.
Read this. Very interesting, and it explains most of the problems that we have.
http://www.vestibular.org/vestibular-disorders/symptoms.php
One of the "advantages??" of surgery is that they will cut the vestibular nerve to reduce vestibular problems.
We get to keep ours, but at times it causes us problems as the tumour swells or shrinks.
If you feel, you have somehow been short changed by having a half functioning balance nerve, Doctors can inject Gentamycin into the balance nerve to kill it. Not a common procedure but it is done for severe balance issues.
Personally I would like to keep my half functioning balance nerve.
Its been 17 months since CK and my balance problems continue to improve.
The odd mild dizzy spell when doing something physical.
Walking in the dark on uneven ground I need to do at a slower pace, but I can do it with reasonable confidence
Hopefully with time, things will improve.
They certainly have for me. I feel completely normal most of the time now.
Before treatment, I also felt like my intelligence had dropped by 20 points.
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Thanks for the info but I didnt have treatment yet,I found out 6 mos ago I have the AN.I hope this is reversable after I get radiation.I took meds. last night that knocked me out!
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Funny story,, I took my 6 yr old granddaughter to the movies yesterday and she LOVES to sit at the top, of course,, well, I could hardly get up the stairs for knocking into the side walls.. I am sure folks in there thought I had been drinking too at 11 AM.. it was kinda scary actually... I am only 8 weeks out from surgery, so this was one of my first excursions.... between that and the LOUD movie theater, my SSD, and the darkness and my "bad"eye drying out,, it was not the most pleasant movie experience I have had!!! On top of that ,, it was Alvin and the Chipmunks!!!
I bounce off door jams and trying to walk the dog after dark is almost impossible.. I am sure also that the neighbors are talking about me "drinking so early in the day"............... this is SOOOOO much fun isn't it??? but life is getting better,, or am I just adjusting to the "new" ME????
Karen,, I like the dr office telling you it was not the test but the tumor,, did you reply that the tumor had not caused these problems prior to their 'wonderful" test???? I hate that test too,, ENG, I believe it is, but it definitely will make you sick for several hours ,, hope it is better by now...
Off to get me a letter Tod,, may save me an unpleasant visit to the county jailhouse!!
Happy Holidays all,, Jane
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Jane, no I didn't say that to the fellow that called me back since I got the feeling he had no clue & I didn't want to "kill the messenger"; however, I am making a list of things to talk to the doctor about at my next visit & that will be one of them.
As far as getting better from the testing, I think it's settling down some but I feel like I'm always on a slight cheap drunk now. Before I only had minor imbalance when up & moving around but now I have "waves" of "weird" feelings when I'm sitting down which I assume is vertigo. Hopefully this too shall pass & as I've read in many posts this is the "new normal" for my life.
Also, a funny grandma story. I told my 8 year old granddaughter that I could not hear or understand her with my left ear. So miss smarty yells OK M E M A!!!!. (had to have been there to get the full affect but she's so funny about my hearing loss)
Have a happy holidays!
Karen
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With a 5cm x 5cm compounded by hydrocephalus, my equilibrium problems got as bad as could be. I got so that I could barely walk, especially on uneven surfaces. When I was walking around my vision was convex (like a fish-eye lens) and my head felt like a helium balloon floating above and behind my body, attached by a long string.
Working as a musician (how ironic!) I was gigging 4-5 nights a week at the time. This required driving long distances late at night. This was an amazing feat with my equilibrium as shot as it was. I was getting pulled over constantly for swerving. With bad double vision, driving was even more treacherous. I would sometimes become disoriented and get lost in the blinding headlights of oncoming vehicles. It was a terrifying experience. Luckily I was never cited for all the times I was stopped. I was staggering and stumbling around like a drunk—and I don't drink. The cops were primarily hunting for drunks.
I began to feel like I was going to die. The malaise I was feeling gradually became the worst fatigue I'd ever had. I'd be falling asleep off and on throughout the day. I'd have to take pseudoephidrine every night in order to get out the door for work.
Driving home from a gig one winter's night I nodded-off behind the wheel for the first time in my life. Even though I had felt it coming on just before getting off the highway and valiantly tried to fight it, it happened nonetheless. I realized how it happens: you don't even know it happened until you snap out of it; that is, if you're lucky enough to snap out of it, still being in one piece.
I had just driven off the exit ramp and onto a secondary road with a double yellow line. Perhaps I had lulled myself into a false sense of security by relaxing, having got off the highway and being little more than a mile from home. I passed out as the road arced to the right and as I began gradually steering into it. I wasn't out for long, probably two or three seconds. When I came too I was on the opposite side of the road broadsiding a snow bank, piled against the guardrail. Because my left wheels had imbedded in the snow I couldn't recover by simply jerking the wheel to the right and shoot back over to the proper side of the road; I had to continue-on driving straight on the wrong side and gradually work my way out of the snow. This road being a major truck route to an industrial park and major UPS distribution facility as well as to the highway, it's a miracle I wasn't roadkill as no one happened to be coming the other way.
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Mindy,
Glad to read of your sense of humor with this. I too have numerous issues with balance/walk of the drunk. Here's one I try to avoid...when the Pastor asks us all to rise, then says let's bow our heads for a moment of silent prayer. While I am able to rise and bow my head for prayer, I'm concerned it may not always be silent. Tipping over and going thump in the pew may not be quietly accomplished. Guess I need to have a little more faith in the Lord to keep me vertical! For now I keep my eyes open, hold on to the pew in front of me and hope the Good Lord forgives me. I kind of feel like a kid again watching what all grown-ups are doing around me :)
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Mindy,
I do the same as one of the others said in church. Keep my eyes open or I just don't stand at all. Funny I thought I was the only one that does that. Also, I run into things so much, especially the foot rail on my bed, that my husband has bubble wrapped it for me so I don't hurt my ankles anymore. We have joked that he is going to bubble wrap the whole house for me so I don't hurt myself running into things anymore. I have night lights on thru-out the house (almost in every room) because nights are so bad for me. My husband and kids hold out their hands as I walk by them to help me get to my destination. Funny when you actually think about it. Thank God for loved ones!! :D
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I'm reading some more of the posts on here, and although I put in some comments already I just had to share again. Tonight I turned the corner to enter our living room with intentions of sitting in the recliner. I'm not sure if my husband or I laughed harder when I turned too short, staggered and nearly ended up wedged between the recliner and the wall behind it. Whoops, another one of my moments. Regarding the nightlights, I just stocked up again. I bought the jumbo pack. I'm pretty sure I have surpassed the quantity I had in the house when my kids were little. Now they're "mom's" helpers for a different reason. Stairs are another fun thing. Thank heaven for handrails and the patient people who get behind me. I move like a senior citizen on those. I guess some days I feel like I'm in training to be elderly...reduced eye sight, limited hearing, slow moving, adding a few more grey hairs, can't remember that I even had something to forget to try to remember (if that even makes sense). ;D
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Since my surgery, I don't have any episodes of drunk walking, however I noticed when I got a cold this past fall I had a couple of episodes where I nearly fell over. I believe the swelling or congestion of the sinuses impacts the balance.
I also noticed, just recently that my tinnitus increases pitch if I move my eyes left, and decreases pitch if I move my eyes right...what a journey this is.
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Some days I am the human pinball - bouncing from one door frame to another!
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I love the human pinball analogy. I might have to borrow that. :)
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Consider it yours ;)
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I love doorframes too. I must, I keep running into them. I'm not allowed to even look at a ladder at work. If I' alone in the back room and I think I can get away with it I will, but only if I'm just going up a couple steps. I figure the fall from that low won't hurt too much. :)
And the butt chewing I'll get from my boss for climbing really isn't worth it. He knows all about my medical stuff (NF2) as does the whole crew, and they do really watch out for me. On the real bad balance days they just tell me to go sit down for a while or offer to send me home. Mostly I try to stick it out. Fortunately the real bad days don't happen too often. But there's no way I could ever pass a soberiety test. ;D
Mark
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I just love this thread! ;D
I've just been to London and walking on Oxford Street during the sales period with another zillion people is quite an experience for us ANers!
But I had to laugh! I never had so many people apologizing for bumping into me although it was Me bumping into THEM all the time. I never told them of course. I just smiled and they smiled back. In fact it gave a very warm and friendly touch to my Christmas holiday. I love the Brits!
Happy New Year to all of you.
Joey
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Walking like a drunk even happens after treatment???I am on the verge of treatment.Wow Golfinos and Rush sounds like a good combo and I am in driving distance.Seamar did you have CK with them,was it a good result and how many treatments?
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I love the AN HUMOR. seriously folks....I am reading aloud to Chris tonight to try to prep her a little about what might come and some of the imilarities we all have. Smiles tonight. Thanks
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Sorry, Teripo. I've been away for a long weekend. Golfinos and Rush do Gamma Knife, and for acoustic neuroma, as far as I know, that is one treatment. I won't know whether I have had a good result until I have an MRI in April. Unfortunately, there are no guarantees, and it may take longer than that to find out whether the treatment was successful. You sort of have to pick your poison very carefully and then live with your decision. For me, my tinnitus is louder and my balance is worse than before GK. Can't do anything about the tinnitus but I'm in vestibular/balance therapy, and I have friends with whom I laugh a lot. Now that's therapy!
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Hi Everyone,
Glad I'm in this club, Its been 7 weeks since my surgery and walking like a drunk is starting to feel normal. I haven't tried to drive yet because it scares me to do so. I have to keep tell my daughter who 21 that she has to talk louder she says I do it because I don't have to listen to her. LOL, I'm starting to feel better and things are going okay, I know it will take time. I went and saw WAR Horse and cried all the way though it. So still have things to work out.
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I'm two and a half years from my CK treatment at Stanford. Balance is just about the same now as it was before CK which is what I expected. I do stagger and believe I'm mistaken for
drunk on occasion although nobody has ever come out and asked. I tried to park next to a curb side mail box the other day and was a little too far away to reach. I got out of the car and really did a couple of bad veers on my way to the box. As I posted the letters, I looked up and saw and man getting into his car in a parking lot next door. He was just staring at me....probably thought I was a drunk driver. I smiled and tried my best to walk straight back to the car.
I bump into doorways regularly and have little bruises here and there from bumps and bangs, but it's surprising how used to all of this you get. In time, it's just part of life.
I have found if I can walk fast, I veer and stagger less. In Home Depot and other large stores, you can get up a head of steam between objectives and I find I'm okay with that.
Also, I'm a big fan of shopping carts...I get one going into the stores from the parking lot for balance and because I can't hear cars starting up in the lot and cannot anticipate the backing up patterns. With the shopping cart clanging and squeaking I figure I make a more visible presence and am less likely to get hit.
My tumor ear is now completely deaf and I'm adjusting to that as well. For me the deafness is worse than the staggering because it's so difficult socially. Gradually, I've learned to cope. When we walk into a party or reception and there's loud music, we say hello and then leave. Same with restaurants - we don't even try when there's loud music or the crowds are loud.
Helen
Helen