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Balance loss, no vertigo, no dizziness


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Old 06-16-2016, 03:36 PM   #1
Cap48
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Balance loss, no vertigo, no dizziness

Back on Dec 7th 2013 I went to get up that morning and could not keep my balance. I did not have vertigo nor was I dizzy. The day before Dec 6th I was fine. The balance issues continues to this day 2 1/2yrs later. I will be just standing talking to my wife and suddenly will just take 2 or more steps off to the right or backwards seldom to the left. I usually manage to catch myself or my wife will catch me but there have been several times when I have fallen. I use a cane all the time when I'm outdoors or on a trip anywhere. I Feb of 2014 I had a VNG test done at the VA. The results still haven't been actually explained to me, I've added them below:

VNG Test Result Summary (results with analysis scanned into patient's CPRS
file):
Occulomotor testing indicated results within normal limits for saccades and
gaze. Abnormal results were obtained during tracking and optokinetic (not
full visual field, therefore not true OKN). Tracking and optokinetic results
were abnormal at higher frequencies.
Dix-Hallpike positioning testing was negative for torsional nystagmus.
Significant down beating vertical nystagmus was noted in both the right and
left positions.
Positional testing indicated results within normal limits for the sitting and
head left positions. Down beating nystagmus was noted in the following
positions (normal < 6 ?/sec):
Head-right: 4 ?/sec
Right-side: 5 ?/sec
Left-side: 1 ?/sec
Head hanging: 10 ?/sec
Left beating nystagmus was noted in the following positions (normal <
4?/sec):
Supine: 3 ?/sec
Right-side: 2 ?/sec
Left-side: 2 ?/sec
Head hanging: 4 ?/sec
Caloric Test Results indicated the following:
Total response right ear: 20 ?/sec (normal is >10?/sec)
Total response left ear: 27 ?/sec (normal > 10 ?/sec)
Unilateral weakness: 15%, in the right ear (normal range < 25%)
Directional preponderance: 11%, to the left (normal range < 25%)
Fixation Index (FI): 46% to 86% (normal range < 60%)
A: Test results indicate abnormal tracking and fixation suppression which
suggests a central lesion. Fixation suppression and tracking mechanisms share
central pathways. Additionally significant down beating vertical nystagmus
was noted in the head hanging position which is also indicative of a central
lesion.

I've also been to the ENT clinic at the VA, their diagnosis is:

ASSESSMENT: Dysequilibrium problem is likely of central origin. I
strongly doubt an inner ear issue, with normal hearing and the
videonystagmography (VNG) pointing towards a central lesion. I really
have no further suggestions at the present time.

I cannot have an MRI due to neural stimulator implanted in my back for back pain. The two CT scans I've had done show nothing my VA neurologist says.

I could go on with more from my neurologist who says 'No way I had a stroke'
Does anyone have any ideas? I would really like to contact someone as I feel the VA isn't really helping me at all. All they're doing is pushing medications on me that don't work. The drugs he's tried are:

We now have the failure to benefit from multiple medication trials to include
meclizine, clonazepam, dilantin, depakote and topamax along with the vestibular
exercises. The symptom of impaired balance is made more likely in the context
of peripheral neuropathy, as you have. No lesions were seen on CT scanning. I
cannot find a note regarding MRI. Is there a contraindication for MRI? I do not
have other therapy for this problem that can be tried.

I've also gone to three months of physical therapy at the VA working with the Neurocom balance manager system.

Chris

 
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Old 06-16-2016, 05:55 PM   #2
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Re: Balance loss, no vertigo, no dizziness

Hi Chris,
As I was reading your post, I thought about my issues with balance after my stroke. One thing I remember during physical therapy evaluation was if I closed my eyes while standing I would stumble over to the side affected by the stroke. I was told that balance is mostly visual. I was totally amazed how simply closing my eyes made that much difference in my balance. I'm curious if you experience the same?

Wishing you well along with all my other friends on here!
Sincerely,
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Old 06-16-2016, 06:25 PM   #3
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Re: Balance loss, no vertigo, no dizziness

If I close my eyes I tend to rock backwards.

I could be doing anything and just stumble (my wife calls it Texas two stepping) mostly to the right or at an angle right and back. Since I can't have an MRI to find out what's really wrong I'm getting more and more depressed especially when all the VA is doing is treating the symptoms. And now since none of the drugs they've tried work and nothing else does the VA neurologist has essentially given up. One other thing of note and I don't know if you notice this or not. I'll be holding my head straight and looking forward. While doing this I move just my eyes to the right. I will tend to feel kind of lightheaded and my eyes will feel as if they need to snap back to the center position. This doesn't happen if I move just my eyes to the left. Also, at times when doing this I'll 'hear' some kind of 'rasping' sound as if it's inside my head. Sounds crazy doesn't it.

Last edited by Administrator; 06-16-2016 at 08:58 PM.

 
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Old 06-16-2016, 07:14 PM   #4
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Re: Balance loss, no vertigo, no dizziness

Unfortunately, yes it is bizzare. When I'm trying to explain or describe things to my neurologist I say, "I know this sounds crazy BUT..." Haha

I have buzzing sound in my ears but it has not been connected to my stroke but it started after the stroke. Dr says it could be medication related.

 
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Old 06-16-2016, 07:37 PM   #5
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Re: Balance loss, no vertigo, no dizziness

I know what you mean by that. It's probably much easier though for you to get your neurologist to understand than it is for me to talk to mine at the VA. I've got Tinnitus really bad in my right ear but I had that even before this happened.

 
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Old 02-15-2017, 01:28 PM   #6
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Re: Balance loss, no vertigo, no dizziness

I am still unable to maintain my balance. This is not accompanied by vertigo or dizziness. This is still going on multiple times during the day so bad in fact that I have to use a cane to walk. Other symptoms, I have a constant headache since last Feb, pain level varies 3 - 7 but it's always there. I take 3 800mb Ibuprofen a day plus 1/2 a 100mg Topiramate in the am and one at night. In the past 3wks or so another odd symptom has started. I'll be standing in one spot and suddenly I will start stomping my feet as if I'm still in the army and I'm marching in place. One more symptom is that if I move my eyes to the right they will seem to want to snap back to center and I will hear a grating sound in my head.

The VA Neurologist after all these years finally determined that he was out of his league with all this and referred me to what he called 'The Big Guns' through the Veterans Choice Program. So far I've not been impressed by him. He doesn't seem to believe a lot of the symptoms I'm telling him about. He's run a lot of blood tests to try and see if any of these showed any problems and so far they're all normal. I'm 68, getting to be at the end of my ropes and running out of ideas.

Anyone here have any suggestions?

 
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Old 02-15-2017, 03:23 PM   #7
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Re: Balance loss, no vertigo, no dizziness

Hi Cap48,

I'm surprised that you have only been seeing Neurologists. It may not be neurological in origin at all. I think when a specific specialist can't help, try a different specialty or even a GP.

Loss of balance and your other symptoms could easily be due to inner ear issues. Try doing a search of the words 'imbalance inner ear'.

I also suggest gettingsome balance physical therapy before you suffer a fall which can break bones or cause sprains. If you are like most of us we lose balance as we age and don't take the time to do what it takes to retain strength and balance. Even tightness in the shoulders and back often causes serious pain and imbalance. My son in the military is now in close to 50 and has to constantly & work on fitness just to function.

Keep searching but search beyond neurology.
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Old 02-15-2017, 03:52 PM   #8
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Re: Balance loss, no vertigo, no dizziness

Hi YaYagirl, problem is the GP is see is also at the VA and she has no clue which is why she has referred me to the VA neurologist. I've been examined at the ENT clinic at the VA and no ear problems were found. Also, I've been through 3 months of physical therapy on a balance master which had no effect at all. So, bottom line, no one knows what to do with me or how to fix me.

 
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Old 02-15-2017, 04:06 PM   #9
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Re: Balance loss, no vertigo, no dizziness

Hi Cap48,

Can you see a different GP? different doctors have different experience and knowledge.

Do you have to have referrals for everything?

I recommend seeing a Osteopath MD (they have way more education than MDs) and understand the whole body, not just a specialty. Also, OD's can do manual manipulations and they understand what tension can cause. Really, the best way to help your self is to start doing yoga and make yourself relax. All the worry and tension and stress of this can cause just about any physical symptom. I know by personal experience.

See older doctors (not ancient ones, haha). Older docs have much more experience and so know more about what may be going on.

How much were the inner ear possibilities explored?
And, also, what drugs and supplements are you taking?
Have you been checked for toxins or poisons?
Something is throwing your body out of whack for sure.

Can you go see a Naturopath doctor? I go to one for health and imbalance issues, myself.
I think often we need help to think outside the box.
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Last edited by Administrator; 02-15-2017 at 04:50 PM.

 
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Old 02-15-2017, 05:48 PM   #10
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Re: Balance loss, no vertigo, no dizziness

Thanks for the suggestions, I'll take a look into the Osteopath. The inner ear was pretty much a general exam by the ENT. As far as drugs I'm taking 800mg Ibuprofen 3x a day for this constant headache, not a migraine and Topiramate for it also. That's it. I just finished a long list of blood test with this supposed 'Big Gun' neurologist that the Veterans Choice program had done. I don't know what all he was checking for but they were all normal. A few other odd things of note. On one of my CT scans and my MRI I had done at the VA they showed

Nonvisualization of the left
lobe of the thyroid, possibly absent. And at the end it said

Primary Diagnostic Code: SIGNIFICANT ABNORMALITY, ATTN NEEDED

I asked my Primary Care Dr and my Neurologist about the thyroid
statement and was asked if I had part if it removed. I had to laugh and
replied 'not that I'm aware of'. Then asked about the next statement
and told not to worry about it. Then on the 1st of Dec last year when
they did an MRI of my brain the report showed this - Primary Diagnostic
Code: ABNORMALITY, CORRELATE CLINICALLY and again, oh, don't worry
about it. This from both the VA and the 'Big Gun'.

 
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Old 02-15-2017, 06:20 PM   #11
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Re: Balance loss, no vertigo, no dizziness

You mention having a spinal cord stimulator for your back pain. Is this for cervical or lumbar spine issues? Did you ever have any spine surgery?

 
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Old 02-15-2017, 06:28 PM   #12
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Re: Balance loss, no vertigo, no dizziness

Yes, I had spinal fusion surgery in 2007 L4-L5 I believe it was. They were both implanted in my lower back one on each side.

 
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Old 02-15-2017, 07:46 PM   #13
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Re: Balance loss, no vertigo, no dizziness

Hi Cap48,

Wow, amazing what doctors can pronounce as insignificant and say don't concern yourself! A possibly absent 1/2 of the thyroid is significant! usually surgeons remove part of a thyroid to stop excess thyroid, then one has to supplement at some point. You may be hypothyroid to a possibly alarming degree. Read about hypothyroidism symptoms.

Also, 'abnormality of the brain' is NOT insignificant! What crap that is. This issue needs to at the very least be diagnosed. It seems like the doctors are trying to cut costs at your expense. They need to find out why you have the headaches, not just dull the pain.

And there are serious inner ear disorders that need to be ruled out. Looking inside the ear means little to nothing. What testing was done?

Topiramate can cause quite a lot of side effects, which may cause some of your symptoms.

The back surgery...anything could have gone wrong by now, nerves may be pressed that cause the headaches and imbalance, or nerves could have died or be severed, etc. When was the last MRI of your spine?

I hope that you keep pressing forward on this.
Your situation makes me sick. Write the President, sir.
I'm so sorry you have been treated like this!

I'm aware that our military folks are tough and do strive to tough things out. No need to cry of course, but please be serious so the dimwits can see that something seriously wrong is going on...it might not kill you, but the symptoms are significant. I minimize my own weakness and pain, myself as it's just how I get by.
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Last edited by YaYagirl; 02-15-2017 at 08:16 PM.

 
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Old 02-16-2017, 11:43 AM   #14
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Re: Balance loss, no vertigo, no dizziness

I'd have to say the problem with the thyroid partially missing has to be something with the CT as I've never had a surgery that would be anywhere near that area unless I was born with only 1/2 a thyroid. Unfortunately I'd have to rule out the Topiramate as causing any of the symptoms as I have only been on it for about a week and even the latest symptom, the 'foot stomping' has been going on for over 3wks now. I think I'm fixing to write first to the Texas Veterans Commission to see if I get anywhere and then go from there.

 
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Old 02-16-2017, 05:51 PM   #15
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Re: Balance loss, no vertigo, no dizziness

This afternoon after some serious thought I sat down and wrote a pretty long message to the Department of Veterans Affairs keeping it fairly short but listing my issues and showing just how badly I've been treated giving some examples. For example, on the 6th of Feb I asked my VA Neurologist to submit a request for a Cervical and Thoracic MRI as requested by the 'Big Gun' neurologist, he replied back with

MRI request C and T spines submitted

Yesterday I sent him a message and asked the status of the request

I did not understand that we were doing the MRI here or that I should put this in. I do not find his report to help me in the Vista imaging. They are now entered. I do not know what their schedule is an MRI.

This is the kind of help I get from this idiot at the VA.
I'm supposed to get a reply from Veterans Affairs in no more than 5 business days, I'm hoping it will be less. My last line of my message was something like - I feel like the VA is just waiting for all Vietnam Veterans to die off so you don't have to treat us anymore.

 
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