Vestibular rehab anyone?

[Brewers7]

I started a program yesterday which should last about 2 months (3x per week).  I had a little vestibular rehab at 4 - 6 months post op but I was still not able to participate much at that point.  Anyone have experience with this?  (good or bad)  Suggestions?

[CHD63]

I had vestibular rehab for many months following my February, 2008 retrosigmoid surgery.  At first I went to a regular physical therapist, which only helped a little by strengthening my core muscles, etc.  Found a trained vestibular therapist and it was a huge difference in how much his working with me and the home program he gave me helped.  Since it was a 50-mile one way drive to his office, I only went once a week for a couple of months, then once every two weeks for a couple of months, then once a month for a couple more sessions ..... all the while doing the home program on a daily basis that he had developed for me.  It made a big difference in how quickly I learned to use my sensorineuro and visual systems much more efficiently.

I no longer do the exercises on a regular basis, but it would probably be a good thing for me to resume them.  Just lazy, I guess.

I really had no additional effects from the translab surgery in May, 2011 since I had already compensated for my missing vestibular systems.

Clarice

[ombrerose4]

I think vestibular rehab has alot to offer us. For me, the change was remarkable from the time I began rehab to the time I finished. I am actually thinking about going back for some refresher exercises, especially to help me better navigate going up and down stairs. My AN NY support group just had a vestibular therapist come in to talk to us about the different issues us ANer's face. It was quite informative and I think alot of people are thinking about doing it.

[Seamar]

As a direct result of the presentation by the vestibular therapist at the NY support group mentioned by ombrerose4, I begin therapy last Wednesday.  I went to vestibular.org to find a qualified therapist.  There were two in my area.  First, I discovered that I have nystagmus in my AN (left) eye.  My therapist thought that for me it was too soon after GK to begin vestibular therapy, which at this point would only increase my dizziness, and that we should start with balance training and then ease into vestibular therapy.  I will be going twice a week.  Also, I have exercises to do twice a day at home.  I had my second session today.  No miracles yet, but I'm feeling really great about the possibility of walking forward more and sideways less.

Cheers!
            C-Mar 

[Brewers7]

Thanks for your responses.  I am not sure that I understand the difference between vestibular therapy and balance therapy.

[CHD63]

Not sure this is correct, but my understanding is that the terms may be somewhat synonymous but balance therapy works more on maintaining a steady gait when walking, where vestibular therapy works on gaze stabilization and exercises that require all three systems (vestibular, vision, and sensorineuro) to work in tandem.

I may be wrong, but I think the main difference is on the ability and/or knowledge of the therapist to evaluate each person's vestibular needs based on what one can or cannot easily do.  My vestibular therapist has many different devices to use for training than my regular PT has.  He also has a Computerized Dynamic Posturography machine to measure/test the relationship of the eyes, somatosensory system, and vestibular system.

Maybe someone who really knows will chime in here.   

Clarice

[leapyrtwins]

My doc had me do vestibular exercises both pre and post op.  They helped a lot.

He also offered to refer me to a PT after my surgery, but the exercises were working for me so I didn't take him up on the offer.

I still have the vestibular exercises in a Word document.   If you'd like a copy, PM or email me your email address and I'll send them to you.

Can't hurt - and they might help.

Jan

[Brewers7]

Thanks Jan.  My email is smbrewer@msda17.com.

[Seamar]

A word of caution, folks.  Using someone else's vestibular exercises could do you more harm than good.  Kind of like using someone else's glasses, hearing aid or ampicillin ... that's what the vestibular therapist at the NY meeting said. I believe it because I was about to start that exercise in which you focus your eyes on a spot on the wall and move only your head from side to side.  I will be doing that eventually, but, as yet, it's too soon for me.

[ombrerose4]

I have to agree. You really need to have an evaluation to see exactky what your balance/vestibular problems are. As you know, we are all so different in our AN journeys and our recoveries, and what may work for one of us may not help or may even complicate things for someone else. Best to leave it to the professionals, at least until you know more about your condition.

[leapyrtwins]

You guys have it all wrong.

The vestibular exercises my neurotologist gave me weren't specifically tailored to me or to my side-effects either pre or post op.

These are exercises that are widely used - and he gives them to all his surgical patients.  They might not help everyone, but they certainly can't hurt anyone either.

Sheesh!!!

Jan

[JW123]

Just chiming in...
I will be starting some physical therapy tomorrow. I had an appointment awhile back that just was an initial evaluation, in which the PT determined the problem was vestibular, which seemed obvious, from telling them it was from AN surgery.  I am going in tomorrow to start some therapy and do a Computerized Dynamic Posturography. I'm interested in how this test will go. They said it can make some people really nauseous. I will let you guys know how it goes.

[CHD63]

Hi Joe .....

Good luck with the vestibular rehab.  I think you will find it very helpful ..... but only if you are also diligent in doing the home exercises, as well.

I have had several CDPs and did not get nauseous on any of them.  But, in all fairness, I have to tell you I have no working vestibular nerves on either side so I can no longer get motion sick (lucky me  ) ...... have to rejoice in these benefits from having an AN.    You are well secured in a harness so there are no issues with falling and I would have to presume your therapist will stop the test if you have severe nausea.

Good luck and let us know how you did with it.

Clarice

[JW123]

Thanks.

So I have gone the the PT a few times now, each time using the CDP. So far so good. I am going twice a week and even in the 3 times I have since gone there has been improvements. Absolutely no nausea, but I do notice an increase in headache pain later in the day on the days I have PT. That make sense though. My biggest deficiency is balancing with my eyes close or in the dark. but as my vestibular nerve starts to work harder I am sure that will get better.

[stoneaxe]

I had only minor success with vestibular rehab. It wasn't until I found Standup paddleboarding that I found much relief. I have a theory that the broad flat horizon of the ocean in combination with pushing my balance to extremes in waves and chop is what made the difference. Kind of a boot camp for matching the visual and proprioceptive portions of balance. It also doesn't hurt when you fall....