ANA Discussion Forum
Archive => Archives => Topic started by: Sue on October 01, 2006, 12:53:40 pm
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Went to the Oregon Coast for a wedding on the beach. Lovely day, blue skies, beautiful bride, and barefoot in the soft sand. Whoa! It wasn't level sand...this was nestled into the sand dunes and had uneven walking. That was the weirdest feeling I had...my husband looked at me like I was making it up...but I got so..something. Dizzy? I felt like I was going to fall down..like I was walking in a boat. Wow. I didn't have this before my GK treatment. I've walked on a beach before my treatment, before I even KNEW I had an AN and was never dizzy/unsettled. Anybody notice a difference, as a GK/CK patient, something like this. It surprised me, because I haven't noticed that much dizzyness/wobbly/ whatever you call it when I walk around my neighborhood on sidewalks. It was a real "OMG" kind of feeling.
Sue in Vancouver
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I also had no symptoms of dizziness before surgery - but now I would say that loss of balance is my most limiting factor. I can walk briskly on a level, uncrowded sidewalk, hallway etc. But put me on an uneven surface such as a lawn and I am doing the two-step all the time. The worst situations are in the dark, on uneven terrain, in a crowded and/or noisey situation of any kind, when I am tired, or on stairs without handrails.
I am 16 weeks post op. I am now starting to wonder if the balance is going to be a lifetime issue or if it will improve in time.
Good luck to you - just watch our for those nasty beaches!
John
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Hi Sue,
My dizzyness started a day after CK treatment. Got better after taking some Dexamethason, but for a long time I had sumptoms similair to what jtkate describes. It gets better so hang in there and keep up the walking. My guess is that the tumor is reacting to the radiation, becoming inflamed and swelling slightly, this puts more pressure on the balance nerve and your body just needs more time to allow the other side of your brain to take control. In time the tumor dies and you may get some shrinkage. All this takes time, different for each of us however. Ibuprofen helped me a lot when I felt weird. I try to stay active, walking the dogs, go shopping with the wife(not my favorite pastime), just to get out of the house. I think that really helps over the long term. I wish you well, you sound like one of the gang, Bob
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Sue, I'm not a gk patient (retrosig) but live 10 mins from the beach and due to the sloop in the sand and the unstability of the sand I had trouble walking at the beach. It made me feel wobbly and disconnected. the more I've done it the better it's gotten, just like swimming. I would almost puke in the beginning I got so motion sick and now I'm doing better with it.
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My observation...when we walk on even surfaces our eyes and brain know it is flat and we can look out ahead and find the horizon to confirm. ...walk pretty well. But get on an uneven surface like grass or worse, shifting sand and we have to look at the ground, look down. Now we don't get the feedback from the horizon. We start to sense the sifting with the balls of the feet. Look up and you get the whirl...and round and round.ÂÂ
But uneven walking is what we need. We have to keep challenging ourselves. I've read here that some people go back to having sports fun, so the really good balance must be acheivable to some respect for each one of us. A lot depends on muscle strength, age, and determination.ÂÂ
Picture me going to communion, turning to leave and looking down at my footing. Those folks watching me do the two step must wonder. ;) My daughter just behind saw me do that funny one foot step to the side. I am improving at least my sense of humor is there.
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After spending 2 weeks at the beach last summer and the year before, I've decided that PT should take place there! That uneven surface is a challenge, it's even more challenging trying to walk in the water!
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After spending 2 weeks at the beach last summer and the year before, I've decided that PT should take place there! That uneven surface is a challenge, it's even more challenging trying to walk in the water!
Tell me about it! .. I've been wading in the water a few times this year (to fish of course) .. in fast moving river water .. its been very challenging >:(
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Thanks for the feedback guys. I must admit, I've been feeling kind of smug about this dizzyness thing. It was something that I didn't have really. Well, WRONG!! Just needed the right set of circomstance..and bingo, there it was. We used to live over on the Oregon Coast, but we don't get over there as much as we would like, so this was the first 'sand walking' I've had, I guess, since my treatment. I really did think I would land on my butt right in front of everyone, so I just stood VERY still. :D
Vancouver Sue
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I'm heading to the coast at the end of the month and was wondering how I'll do....thinking that what you describe, Sue, would be an issue, so I'll let you know!!!!
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Hi Kathleen,
I think we'd do fine on the hard flat sand. But the soft sand in the dunes area really upset the balance. Like I said, I was like "Wow, where did THAT come from!". What beach are you going to?
Sue
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We're just heading to Ocean Shores....I'd like to go to Oregon, to Cannon Beach, but don't think I can deal with the drive. I'm not an Ocean Shores fan, but it's only 2 and a bit hours from home. Where did you go? Did I ever tell you I was born in Newport? I'm originally an Oregon gal.......
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Lucky me. Maybe, just maybe I'll get to see Kathleen on the way to Ocean Shores. At the least i'll wave as she drives by. My place of employment is a stones throw from the freeway. kathleen, at least you're going at the end of the month and not this weekend. Two zillion people will be on the beaches razor clam digging which means a zillion clams holes to trip in, plus your two+ hour drive becomes a 4 hour plus drive from the bluffs of Aberdeen to the beaches. Makes Seattle traffic looks good.
Hugs
Raydean
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I do find it very difficult walking on soft, uneven sand, but the worst for me is looking out at the movement of the ocean. Our ferry trip to Victoria was a little difficult, no sight seeing for me :(
I swim laps everyday, but only with a kick board, I can not turn my head from side to side without having major dizzies.
Sue - "Dizzy on the Beach" sounds like a cocktail :D   I think our grog master needs to add it to the menu on the PBW
cheryl
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Dizzy on the Beach sounds like a great brelly drink! Can I please have a "Virgin Dizzy on the Beach?" I'm the designated driver!!!!
I walk on a lumpy dirt road with lots of hills and curves--very uneven surface to challenge me. I went hiking with my friend MaryJane, also an AN patient who I was at House with. She lives on a sailboat and cruises all winter. Her balance is incredible. She was just blazing along and I was struggling with 2 hiking poles. She had Gamma knife before her surgery and lost her balance function slowly over time as opposed to overnight like those of us with smaller ANs who had surgery.
Capt Deb 8)
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;D ;D
When I wrote Dizzy on the Beach, I thought it sounded like a concert. But I'll take the drink! Maybe we can come up with a new award winning drink. Have to have ANgostura aromatic bitters, or maybe FrANgelico. Maybe something with mANgos. I'm sure we could come up with something...Acoustic Neuroma Cocktail.
The wedding was in Pacific City, north of Lincoln City. We prefer the north Oregon coast where we used to live...Manzanita, Cannon Beach, Seaside...mostly because it's easier to get to. Would love to spend some time in the southern beaches of Oregon, however and have time to play down there. I was wondering if we went to Victoria or the San Juans if I would have trouble with the ferry ride now. I didn't before.
Sue
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Hehheh, I was down at the beach this past weekend, and I can't agree more about the sand and balance. Try this on for size: Fruity rum punch + sinky sugar sand + nighttime + looking up at Jupiter rising over the Gulf. Talk about dizzy!
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We could have a theme park without the rides! Who needs roller coasters, when ya got your own built in dizzy machine!
Sue
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Sue - The next time I take the ferry to Victoria, I will sit in the middle of the ferry and not next to the window. Had I done that, I think I would have been fine. The ginger candies that they sell on board are very helpful.
Cheryl
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The increased dizziness makes sense to me, but I'm a FL girl (no longer a girl and no longer in FL) and my parents still live on the beach with very soft white sand and totally uneven unless a Hurricane flattens it:( If there is a way to overcome this, I will find it and share. My whole life has been water. Even as a forlorn land lubber these days, I live on a reservoir and have a boat. Worst case, maybe we can take dramabine. I will let you guys know what works when they release me to the water again.
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;Hi everyone
I went for a long walk with husband yesterday here in North Yorkshire UK. I was doing fine walking up and down hills and dales but when I had to cross a small river on stepping stones my balance went haywire and my husband had to assist me across like I was a small child . I think it was the sight of water rushing between the stones that did it . I was perfectly Ok as soon as we got across but decided to take a long detour on the way back to avoid the same stepping stones . This was no hardship since it was a lovely day and the detour went past a lovely country pub which was impossible to resist.
Whether my An or my GK 18 months ago has anything to do with this temporary balance disturbance I do not know .
regards Katarina
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 Balance is an interesting and complex thing. We get positional data from three main sources; prioreceptors in our body that sense pressure (for example in our feet, sensing pressure on the right side of our foot if we're leaning right), vestibular data from the balance organs in our ears, and from visual data on what's happening around us.
 My guess is that when our vestibular system is compromised from an AN or from AN treatment, one or more of the three vestibular data input sources is not working as before. The vestibular nerve on one side is often affected during AN growth, or even cut entirely during treatment.
 Many AN patients find that they can't visually track moving things as well, especially if a vestibular nerve is cut. It seems as if the patient's bandwidth to process "balance" data is reduced. For example, if things around the person are moving too much (people flying by in a crowd, or fast water moving in a brook), they can't process the visual positioning information fast enough, and may feel off balance.
 The brain is expecting the same vestibular balance data as before, ah, but things have changed.  Vestibular training therapy can involve trying to get the brain to affectively use the new balance data. For example, visual exercises to help retrain the brain to the new feedback it's getting from the eyes. Or exercises to help get the brain to perhaps weight one type of balance data over another compromised input. For example, an exercise where you stand in a corner (the walls are there to catch you if you begin to tip over), legs apart, then as that becomes easier legs together, then one foot in front of the other, then with eyes closed, then eyes closed while moving your head around. Somtimes this is all done while standing on a pillow, which is harder to do. All this is to retrain the brain to affectively deal with the modified balance input it's getting.
 If you have balance problems related to AN, I would really recommend seeing a Physical Therapist experienced in vestibular retraining. It can help.
Regards,
Rob
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Wow, thanks Rob for the information. I appreciate it and will try those exercises.
Sue in Vancouver
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I am definitely one that has trouble with the moving stuff. I'm generally fine if things are moving exactly with me, or parallel to me, but if it's perpendicular or non-sensical, I have the urge to sit down or hold on to something. It makes for big trouble when I'm driving. I talked to my Dr. about it, and he didn't think that vestibular training would help that condition, that I would hopefully grow out of this. Maybe, maybe not...maybe VT would help....since I'm only 3 months out I'm just going to keep an eye on it for now, and practice my sand-walking in a couple weeks....maybe we can add that to the list of the AN games we were talking about!!!!!
I do think continually challenging yourself is helpful to most of us in getting past these issues.
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My friend is a pt who specializes in vestibular training, she would argue that she could help you gennysmom.
Our first trip to the beach I was a year post op and my dh had to hold both my hands while we walked in the water, like a small child. This year, 2 years post op, I could walk with him only holding one hand....so things do improve.
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I went to the flea market the last saturday, I wasn't feeling all that great before I left. the short car ride made me feel even worse. Once I got at the flea market which was really busy trying to look at all the junk I didn't need, the people moving by, and the swaying over the uneven gravel I got sick and had to go home. This IMO triggered a mild migraine enough where I had to take tyn and go to bed with a ice bag on my head. Seems like alot of movement around use IMO is more than our one balancer (8th Nerve) can handle. I also have a problem on anything that moves or uneven surfaces.