Author Topic: A question for those of you with no vestibular function in both ears?  (Read 6002 times)

Dizzyme

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Do you use a mobility device such as a cane, walking stick or scooter to help with the fatigue?
Looking for your experiences and coping skills.

Dizzyme

CHD63

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Re: A question for those of you with no vestibular function in both ears?
« Reply #1 on: January 09, 2015, 06:00:01 am »
Hi Dizzyme .....

I have had no working vestibular nerves on either side since my 2008 surgery.  Initially I used a walker ..... graduated to a cane within a couple of weeks ..... eventually to most of the time walking unassisted.  I had intensive vestibular therapy for several months with a trained vestibular therapist.  He taught me a number of coping skills, as well as good exercises to strengthen my two remaining parts of my balance system (vision and sensorineuro).

Now, almost seven years later, I still grab a grocery cart in grocery stores for stability when shopping in that noisy, busy, visually stimulating environment.  Because I also have back issues, I take a sitting cane along when traveling.  I also ask for wheelchair assistance in airports.

To be honest, I avoid large crowds of swaying people whenever possible.  When not possible, I stay close to a wall, furniture, or whomever I am with in case I lose my sense of where I am in space.

As for fatigue, that always makes everything worse.  When my extended family went to Disneyworld a year ago, I rented a scooter each day ..... otherwise I have not used a scooter.

Hope that helps.  Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Dizzyme

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Re: A question for those of you with no vestibular function in both ears?
« Reply #2 on: January 09, 2015, 06:49:17 pm »
Thank you Clarice, I was also wondering if you still get that confused, lightheaded, detached from reality feeling still after 7 years or do you feel somewhat normal?

I find I do better in conversations and social activity when I am sitting down rather than standing? I guess it just takes time? 

Do you still find yourself making progress after 7 years in?

Thanks
Dizzyme

CHD63

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Re: A question for those of you with no vestibular function in both ears?
« Reply #3 on: January 10, 2015, 06:09:10 am »
Hi Dizzyme .....

Most days and in many environments I feel quite normal.  Other days, when I am either stressed or very tired, that lightheaded, detached from reality feeling comes in waves.  I know it is time to remove myself from noise and visual stimulation when that happens and if possible, grab a quick nap, or at least sit down and close my eyes for a few minutes.

I, as well, do much better in social situations sitting down.  In restaurants, my family and friends all know I do better in a corner booth or at least against a wall, rather than with noise/visual stimulation all around.

As for still making progress ..... I will be honest and say that it probably is what it is now.  However, I now rather instinctively know what to do to avoid my trouble areas so I give it less thought than I once did ..... e.g. always hang on to railings on stairs, stay near something to grab, use night-lights, etc.  ..... really not all that differently than what is safe for anyone.  One thing I do not/can not do any more is walk outdoors in the dark by myself.

How far out are you from treatment?

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Dizzyme

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Re: A question for those of you with no vestibular function in both ears?
« Reply #4 on: March 23, 2017, 07:41:41 pm »
Hello Clarice,

It has been a while since I was last on and things are coming along slowly but surely. 

Thanks for all your input, help and support, it is much appreciated. 

The one thing I am having difficulty with is the fatigue.
Do you still have fatigue and get tired or are you bused to it?

I was also curious as to whether th end Oscillopsia still bothers you or have you gotten used to it?

Mine comes and goes but always seems to rear it's ugly head at worst of times!

Thanks
Dizzyme

CHD63

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Re: A question for those of you with no vestibular function in both ears?
« Reply #5 on: March 24, 2017, 05:33:04 am »
Hi Dizzyme .....

It is good to know things are coming along better for you. 

To answer your questions:  Yes, I still experience the fatigue, especially if I have had to be in a noisy, visually busy environment for an extended period of time.  I find myself avoiding those situations, when possible.

Yes, the unbalanced feeling still bothers me.  However, I have learned from experience that the feeling is usually transient so I no longer panic when I have a wave of it.  But, yes, it does sometimes appear at unfortunate times.  I still have to be super careful in new places, such as motels, where the shower/tub is white with a white shower curtain or I cannot easily put my elbow against the shower wall.

Keep in touch .....

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Dizzyme

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Re: A question for those of you with no vestibular function in both ears?
« Reply #6 on: March 29, 2017, 08:48:12 am »
Thank you Clarice

you have been a very big help to me as well as an inspiration these last few years.


Dizzyme

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Re: A question for those of you with no vestibular function in both ears?
« Reply #7 on: April 20, 2018, 09:36:23 pm »
Hello Clarice,  it’s been a while and things are what they are, just taking it day by day and staying positive.

Clarice, I was wondering about your ability to swim and if you go to the beach, pool or have been boating since loosing all vestibular function? 

Also, when riding in a car do you have issues looking out the windows at high speeds?

I am finding that loosing my vestibular function is better than the constant dizziness and vertigo that was debilitating.  Now I can enjoy life once again.

CHD63

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Re: A question for those of you with no vestibular function in both ears?
« Reply #8 on: April 21, 2018, 05:37:18 am »
Hi Dizzyme .....

Good to hear from you again.  Staying positive is so important when dealing with any health issue.  Sometimes it is easier to do, sometimes not so easy.   :)

Yes, I still can swim and enjoy the pool.  Water is very forgiving and allows me to exercise without fear of falling.  I do not think I have been in a small boat since having the AN.  My husband and I have been on a couple of river cruises in long boats and that, of course, was no problem.

I have no issues riding in a car because I am not physically trying to maintain my balance in that situation.  Initially I avoided driving because I thought I would have trouble, but when my husband insisted I try in an empty, large parking lot, I had no difficulty except if I rapidly turned my head to check beside me.  I quickly learned to use my mirrors and avoid rapid movement.

One thing that still bothers me is walking down some hotel hallways with wild patterned carpets!  In those situations, I try very hard to focus on the wall at very end of the hallway, instead of looking down ..... and stay close to one of the walls.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Dizzyme

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Re: A question for those of you with no vestibular function in both ears?
« Reply #9 on: April 22, 2018, 02:46:12 pm »
Thanks a million Clarice

I really look forward to enjoying the pool and possibly a few boat rides this summer. 

Your advice and insight is always appreciated.

Dizzyme

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Re: A question for those of you with no vestibular function in both ears?
« Reply #10 on: February 01, 2019, 01:03:37 pm »
Clarice,

i took your advice and thoroughly enjoyed swimming in the pool this summer.  While i did venture under the water i still was able to get along and play with the kids and enjoy the day we went to the pool.  My next venture is to try and take a cruise this coming spring.  Any advice would be very helpful if you have ever done a cruise? 
I would also like to go take the kids to Disney one day and was wondering if you have experience with amusement parks?  My doctor told me i would be able to ride roller coasters all day and not get dizzy.  i am still a little worried.

Clarice,
my doctors do not like it when i use a mobility device but i feel so much safer on one and it really helps alleviate the brain fog because my brain is not working overtime.  While i know it is not something i should do everyday all the time, do you ever resort to using a scooter in busy places, parks or vacations?  Even a cane or walking stick make me feel safer  if i ever get bumped or have to use steps. 

i thought my oscillopsia was gone and then out of nowhere it reappears and is a little disheartening but oh well, i guess it its just what it is.

Thanks Clarice, i always check in to see and read your posts because i find them so very helpful and encouraging.  Thanks for taking the time to help me through this as we know it is full of ups and downs and good days and bad days, but you always seem to have more good days than bad days and that gives me hope to never give up.

Thanks Clarice and everyone else who has helped me deal with this.

dizzyme


CHD63

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Re: A question for those of you with no vestibular function in both ears?
« Reply #11 on: February 02, 2019, 08:31:50 am »
Hi Dizzyme .....

It is good to read your update.  It sounds like you are venturing out of your comfort zone more so that is a good thing.  Each little success gives us a boost, doesn't it?

Hurray for trying a cruise.  I think you will be pleasantly surprised on how well you can navigate.  I have been on both a big ocean cruise ship and a couple of river longboat cruises.  The ocean cruise was a smooth weather situation so no issues on that ..... rough weather might have made a difference in my walking comfort.  The river cruises were wonderful and no issues whatsoever there.

We went to DisneyWorld with all of our children and granddaughters several years ago (post AN).  I rented a scooter each day while there simply because of the fatigue factor trying to navigate in crowds of swaying people.  It was well worth the money (and besides, I served as the packrat for everyone else's "stuff."  ;D).  I never was a roller coaster fan so I did not try that, but I did enjoy all of the other rides with no problems.  Again, it is a case of sitting in a moving device, as opposed to trying to walk in a moving device.

The reason your doctors do not want you to use a mobility device on a regular basis is you need to keep training your brain, eyes, and sensorimotor sensations to keep you stimulated for maximum compensation.  Because I have developed some other non-AN related health issues, I now use a cane for safety when I am away from home and know I may have to walk across open spaces.  In Costco and sometimes Target, when I am having a particularly rough day, I use one of the store scooters.  Normally I just grab a regular shopping cart to use for stability so I can look around while pushing it.  I do not use any assistance in my own home where furniture and/or walls are readily available.  :)

Contrary to our desire to take the path of least resistance, it really does help to alleviate the brain fog the more we stimulate our brains.

Hope that helps.  Best wishes.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

 


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