Chiari Malformation Community
TOPIC of the MONTH AUGUST 2014~~Balance
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TOPIC of the MONTH AUGUST 2014~~Balance

Hi all we all tend to have issues with balance whether it is from feeling dizzy , vertigo, or just unstable feet and legs.....

In doing some research I found for toddlers learning to walk, many pediatricians suggest they go barefoot to be able to find their own footing...then use a soft flexible shoe one that gives as opposed to one that is stiff and unyeilding to the movement of the foot....so there is more rocking and tipping over then walking and the movement is all in the legs and not the foot as it should be.

I decided to try this...and got myself some softer soled shoes....Go Walk are great I can now walk on grass....I was wondering if others have attempted to try different things to help with balance?
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999891_tn?1407279676
When I have vertigo I focus on one spot, like a wall picture and try to stop the spinning sensation, it helps a little.
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620923_tn?1405964489

  Vertigo is bad and way beyond balance issues...lol...I had it for 2 weeks straight at one point so I know what that is like....

For the balance issues I am referring to those that feel like they are walking on boards that are laid on top of marbles...lol..no dizziness involved...just balance is off.

For my vertigo, for some reason it was worse when I would try and move to my left...as long as I moved right I was able to continue with my day.....very strange how it can last so long and no way to stop it completely.
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7489440_tn?1392096009
Though it was recommended to me by loved ones and concerned friends wearing soft bottom shoes makes it worse for me. I hate to say it but I go barefoot until its time to get out of the vehicle to go into the store. I am also beginning to wear the neck brace to keep my head from jaring, which seems to also cause my dizzy spells. I will be attempting to ride my horse next week upon my return to home. So I will also be wearing my neck brace as well. I learned my lesson, we won't be jumping for awhile, but I do believe a nice little walk on the beach will do us both some good. Helps with balance as well. As I see so many handicapped children learn to ride therapeutic horses and feel great afterwards. Maybe just take baby steps for now.
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999891_tn?1407279676
lol you know me Selma I don't walk I float.
I find it hard to wear shoes so I mostly wear sandals, my feet burn or feel like they burn. I cant walk without looking on the ground ahead, this causes neck pain. I had PT a few months ago and I asked the Physiotherapist about it. She did some checks and noted two things wrong. I have no reflexes in both limbs and I have only limited vibration sense in both ankles. I dont know if this is related to my balance but I think there must be. I have nerve damage ( neuropathy) that my NS tells me is not related. I believe because my NS thinks they are not related he just ignores it.
Sorry about the rant!!  
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620923_tn?1405964489

  LOL...oh don't I know it your an Angel...lol..

  No by all means rant...this gives me a better look at how others are dealing with this issue.

For me when I was not feeling dizzy or dealing with vertigo, I had issues mostly if I was busy doing something and all of a sudden my arms were flailing all over as I lost my balance...with vertigo the room is spinning so you expect to loose your balance, but not when you feel ok....

I am not sure if it is going bare foot and wearing a softer soled shoe or that I am 5 yrs post op and it is just getting better,....but I am seeing improvement and that is great for me.,..and I wonder how others are dealing with this.

BTW- I also watch the ground in front of me...as we need to know if there is a change in the angle of the ground otherwise we fall....I do not get neck pain from this, but I am short, and you are taller mayb that is why???lol...
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999891_tn?1407279676
Yes I know what you mean. I have dizziness pretty much all the time though, I do fall and it is usually backwards and to my right side. This is interesting and I had not thought much about it.  

Do you think footwear is important for people with EDS and other mobility problems? High boots would give good support??

Yes but I have fused vertebra so I have a short neck. My neck gets stiff
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620923_tn?1405964489

  I do, but I am not sure what is the right way to go...I tried sneakers with a rounded bottom and they were hard to walk in...and expensive....

I have boots 2 different pair, my first pair ...pigskin ...I love those, well the last time I wore those I had electric shock like sensations in my feet (b4 surgery)
I also have an issue with finding shoes that do not hurt my feet...or bother my ankle....I have sooooo many issues...lol...over sensitive and that could be the EDS....

Hmmm  how do I not remember that one...when was it fused or did it fuse on it's own?
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999891_tn?1407279676
It is hard to know what to do. Maybe a trip to a chiropodist might be of a way to go.

Yes I was thinking EDS would have it own problems, Frustrating!

I have congenital fused vertebra, C6 > T2  
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620923_tn?1405964489

  Never heard of a chiropodist....interesting....did Kevin tell you about them ?

  hmmm    don't know if I knew that or just forgot...lol.....

yeah....EDS does have its own issues
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999891_tn?1407279676
No, AM goes because of her diabetes.

Chiropodists and podiatrists:
deal with the assessment, diagnosis and treatment of the lower limb and are qualified to treat people with arthritis, diabetes, nail surgery and sports injuries.

lol no worries. It has some of the characteristics of klippel feil syndrome witch is also related to CM but I have never been told I have this.

I only recently started to learn about EDS.
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620923_tn?1405964489

  Oh I see you have not been listening to me....ok....I get it....


ummmm I thought you went to bed???

  Yeah I gad a Dr ask me if I had that, I said I had no idea what it was...lol...Drs...sigh

Thanks for description....lol...
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4816750_tn?1368808270
Selma,

Mine is a little different.  I do go barefoot and that is good, but soft shoes makes mine worse.  I use a stiff bottom shoe like the New Balance.  If you lay a board down like a 2x4 or even 2x10.  I can not walk on it fall off or can't even get a step.  My balance issues are a lot better that before surgery.  I walked like a pin ball and bounce off the walls.  This is one thing was a little hard getting adjusted to. But did it.
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620923_tn?1405964489

  Thanks for adding that Frankie....I had very stiff soled shoes up until last summer and I could not walk on the lawn with them....I am doing so much better with the soft soled shoes in that regard,....

Glad to hear your balance issues  have improved since surgery as well <3
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Avatar_f_tn
Flip flops are the high heels that southern girls wear! Not only are they soft soled but they can be quite stylish as well. Plus, you can get them in every color in the rainbow, at some places for under $10.

But to seriously answer this month's post, I can contribute this fact: not a day goes by that I don't trip walking up the steps. And every set of steps, anywhere, trips me. When I come down, I hold on to the railing really tightly.

I am not sure this is a balance issue - and I hope you all can forgive me for the bluntness. Sometimes, while I am driving my own car, myself, I get a sudden bit of nausea and immediately vomit. This occurs in traffic at points that I do not always have the opportunity to pull the car over. I have learned to carry those small white airline barf bags.

Another balance-related issue that I struggle with is, when I am a passenger, not being able to turn my head to look at trees and flowers. As the car is speeding on, and if I do turn my head, I get nauseous. Now that is probably more related to issues of vertigo. Overall, I have always been awkward and klutzy (the words of my dear mother), so I just lump all these little quirky things as just the way I move around on this earth. As rod44 enjoys here on earth, when I go to heaven I will not worry - I'll just use my wings to get around.
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620923_tn?1405964489

  Flip flops were the death of my summer footware...My feet would slide all around on them...and I felt they were not safe to continue wearing...I just tried them again this weekend and found they still do not work for me....and I love and miss them ....lol...right after my surgery I got a pair of "boys sandels" yup from the boys department as my feet are small,,,lol..and the womans dept did not have what I was looking for...I wanted a sturdy sole, and I wanted my foot to be held into the shoe...I got that ,with open air ( like my flip flops) but I wondered if the very stiff sole was hurting me more then helping as I walked on uneven surfaces I tended to teeter a bit more then on a flat surface...such as a lawn I felt I would fall at any moment...last yr I got the Go Walks and found I can navigate the lawn areas easier with this more flexible sole....only problem is mine are a closed shoe and not the open air shoe I want for summer...
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Remember that I said that flip-flops were high heels? The highest my heels ever get are as thick as the soles of my tennis shoes. I wear flip-flops on the beach; sadly, I live about six hours inland from the North Carolina coast. My real foot wardrobe staple are what I hear called "practical, sensible shoes." I am sure my wise cracking students call them "orthopedic." But I go to class everyday - with the assigned reading prepared! Ha!

The landscape of the campus where I teach my class is relatively flat. The only thing I have to do is climb two flights of steps to my classroom. I just climb slowly, the knuckles of my right hand white on the railing from my grip. For some reason, my falls are always on the way up stairs - probably because I try to go too fast.

As far as the issue of balance in walking, I struggle, but mostly, I just go slowly. My challenge is when I am riding in a car - when I look at any image outside the window, moving by, i get dizzy. I am not sure if it is my equilibrium that is bothered by movement.

Now that I have a diagnosis, I know that one of the first things those with Chiari are cautioned about is riding roller coasters. When I read about this, it came as a relief because I don't get laughed at when I only go on the "baby rides."

I still think that my biggest challenge is my pathological terror of vomiting- because it has overcome me in so many places. It is not a queasy feeling like I think most people get, it's the result of images moving past me. I would be ever so grateful to anyone who has a remedy for this. A girl can only drink so much ginger ale.
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6150006_tn?1408380236
Bless your heart!  I, too am influenced by what is going on around me, but I only get nauseous. When in PT after surgery, I could not not face another person on the bars because their movements made me sick.  For a very long time I kept my eyes closed in therapy. My therapist said he'd never seen someone experience this.
I wonder if what we all seem to have is Central Vertigo as opposed to the Vertigo commonly called BPPV?  Central Vertigo is caused by a Central Nervous System disorder, i.e. Chiari.  Interesting reading.  This is what my doc says I have and the VNG test determines this.
I also have problems with too much sensory input: high noise level, much movement around me, the necessity to turn my head or look up & down any extended periods of time, needing to make multiple decisions, in other words the dreaded grocery shopping.  I am not yet comfortable, heck, I just want to run away, even in Church.  I cannot imagine trying to work as I did B4CM surgery.
Please correct my grammar & punctuation!
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Again, all of your comments have confirmed unspecified symptoms I have daily after 2 Chiari decomp surgeries.  The 2 much sensory input / stimulation is driving me crazy.  My husband is a local elected official & I retired lately from our Congressman's Office so we are (or I was) active in the area.  Now going to activities REALLY bothers me... speeches, band music, crowds, fireworks, any loud noises or bright lights bother me and will bring on a migraine.  Going to the grocery store is all but impossible w/o help, I can't lift a gallon of milk w/o pain & pushing a cart full of groceries bring on yet another migraine.  Dizziness is also a problem & it is getting worse even tho I have been decompressed X2.  I have never had good balance even as a kid, but now I cant walk across the floor w or w/o shoes w/o staggering.  Laying down in bed  or rising from my recliner makes be dizzy and the dizziness always starts in the occipital (back) part of my head.
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620923_tn?1405964489

  Hi...are you aware if you have any related condition to Chiari that may be causing some of these symptoms to  continue?

Also, how long since your last surgery? It can take time to heal...up to 2 yrs for the nerves.....we tend to go by how the incision site looks and think, ok we are all healed when in fact healing has just begun inside.....

Sounds like you may have ICP or POTS....a change in pressure with the position you are in.....

You will want a Dr to test you for these issues.
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510038_tn?1398389277
Oooooo balance! How fun! Mine has come a long way over the last year. I have bilateral foot drop which makes balance even more exciting ;) At this time last year I wasn't even able to stand still in the same position without losing my balance and having to sit back down. From August 2013 - February 2014 I needed a walker or a cane in each hand to keep my balance while walking, but lots of physical therapy and learning how to work with my body have helped tons. Now I only rarely stumble like a drunkard. I have AFOs (braces) for both legs that help me pick my toes up off of the ground to walk normally (heel hitting the ground first), but I do a ton of practice without them and it has helped. For balance I do a lot of barefoot walking. I don't wear shoes around the house at all. I also practice standing on one leg at a time and do tandem balancing (one foot right in front of the other). Sometimes I practice walking using the tandem balance too, which is when you just walk heel to toe and I practice walking backwards, which was a big issue for me and my balance problems. Standing still with eyes closed helps too, even though it's scary (this makes rinsing my hair terrifying sometimes. I just recently started standing in the shower again after using a bench for a year. I'm actually very proud of that). Standing on foam or pillows also helps work on balance, so when you're on solid ground it seems easy. I learned these techniques in PT and they've helped a lot. I did a ton of other balance work in PT too, but you need equipment for those exercises. Lastly, stretching is really important for me. My ankles, calves and quads stay really tight which can make it hard to keep balance, so I make sure to stretch all of these areas several times a week =)

Also, all of your flip flop comments have made me jealous lol. They're nearly impossible to wear with foot drop because I'd trip over them and fall on my face. Oh, how I miss flip flops! I have to wear tennis shoes outside of the house with my braces, but I'm beginning to practice walking with tennis shoes and no braces. Progress is slow, but it's progress nonetheless! And in regards to some other comments above, I used to stare at the floor while I walked. It took a whole lot of trusting myself, and a whole lot of my physical therapist reminding me that the floor wasn't going anywhere, to start looking up while I walk. It was very scary for me, but the better I got at keeping my balance the more confident I got and the more secure I felt without looking at the floor. =)
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Hi Selma...what is ICP and POTS ?  Please refresh my memory.  Also, to answer your question, it has been about 2 years since my last decomp surgery and it was done b/c my NS found that my patch needed to be replaced due to scar tissue and brain sag and he also used a titanium brain sling to treat brain sag.  My dizziness has only started about 2 mnths ago, is worse when I have a HA, happens when I am rising from a chair, turning over in bed and rising from bed when lying on my back or am bending over or rising from the toilet, basically whenever I put any pressure on the back of my head.  In fact it sounds silly, but I can feel the dizziness begin at the back of my head and find myself grabbing the back of my head first.  It is not inner ear as I have already had that checked.
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620923_tn?1405964489

  I'd be glad to...ICP-inter cranial hypertension....excess CSF builds up.
This used to be called PTC - pseudo tumor cerebri.

POTS- Postural Orthostatic Tachycardia Syndrome  is a form of dysautonomia. POTS is a subset of orthostatic intolerance that is associated with the presence of excessive tachycardia on standing. A tilt table test is done to help determine this DX. Current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing.

Was there any change in your activity levels when this all started or new stressors?

Were ALL related conditions ruled out B4 ur surgeries?
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What kind of related conditions?  with my 1st decomp surgery my NS looked at my MRI's that I bought with me from the NS that was not helping me, found the Chari and the brain tumor and did the surgery....with the 2nd surgery the same NS determined that the dura patch had scar tissue with what he called funky stuff cause I was sensitive to Kevlar and relaced it with titanium, decamped me again and used a brain sling to treat brain sag.  I have done reasonably well each time post op but the symptoms came back after 5 years first time with severe HA and now its been a little over 2 years and I still have bad if not severe HA, now dizziness, electric shock in hands and feet, light/sound/smell sensitive...problems w/ R eye,
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There has not been any changes in my activity levels.  The NS did not do a tilt table test on me 2 yrs ago so he must not have thought I needed it at the time, but he did measure my CSF flow and said it was with normal limits if I remember correctly....BTW, you can ask my husband tho, I have terrible problems with my short term memory.  Ask me something that happened 20 years ago and I know it perfectly, but I may not know what I ate for breakfast yesterday.
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620923_tn?1405964489

  I am the same with my short term memory...that is why I always ask for a refresh on history with members as I can not recall it...but my long term memory is fine....

Related conditions...CCI which is related to EDS...so if you have one, you most likely have the other...so get checked for EDS....flexion and extension Xrays help determine CCI...cranial, cervial  instability.....

  EDS can cause us to have reactions to meds, and materials....it can also cause abnormal scarring.....

  What type of dura patch was used for your last surgery?
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