Author Topic: A question for those of you with no vestibular function in both ears?  (Read 4426 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.

 


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