Dizzy on the Beach!!

[Sue]

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

[jts]

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

[Bob Partak]

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

[Battyp]

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.

[Boppie]

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. 

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. 

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.

[Pembo]

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!

[Joef]

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 

[Sue]

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. 

Vancouver Sue

[Gennysmom]

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!!!!   

[Sue]

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

[Gennysmom]

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.......

[Raydean]

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

[matti]

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    I think our grog master needs to add it to the menu on the PBW

cheryl

[Captain Deb]

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

[Sue]

 

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