Author Topic: Is vestibular rehab really necessary?  (Read 8979 times)

lawmama

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Is vestibular rehab really necessary?
« on: January 18, 2010, 07:30:47 am »
I did have some balance issues post-op, but my balance seems to be improving just from being out in the world.  I rarely have the "wonky head" feeling, and I seem to be fine turning my head when driving and doing most ordinary things.  I would say that the only time I feel dizzy now is if I do something to try to make myself dizzy- to test it.  For example, I would get dizzy if I spin around quickly or shake my head really fast.  So, my question is:  Is there something I will do in vestibular rehab that won't happen on its own with time?

The reason I'm a little resistant to going is because I'm really busy and the place that my insurance will cover is an hour away from my house (30 min from my school).  That's a chunk of my time that I really don't have right now!

Necessary?  Should I go at least once to see what exercises they want me to do on my own?  I should also mention that I'm doing the Wii-Fit Plus and I've made a TON of progress.
9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

Nickittynic

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Re: Is vestibular rehab really necessary?
« Reply #1 on: January 18, 2010, 07:36:56 am »
Even as someone who did months of PT and *did* feel it helped, I would say no, it's not a necessity. If you're motivated to do things at home and 'practice' the things that make you dizzy, you probably won't do a whole lot more. You can check out some exercises like the Cawthorne-Cooksey (hope I'm spelling that right) to get some idea of particular exercises to try. And make sure you're doing a wide variety of stuff - like walking on unsolid ground, in dim lighting, etc. In PT I did a lot on a Bosu, so if you can get one of those that would be another tool.
25 year old OBGYN nurse, wife, mother of two
5.5cm x 3.1cm left side AN removed via retrosigmoid 9/09 @ Hopkins
SSD, Tinnitus, Chronic Migraines, Facial paralysis (improving!)
Resolved - Left sided weakness, Cognitive issues
Gold weight, upper and lower punctal plugs, tarsorrhaphy

pjb

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Re: Is vestibular rehab really necessary?
« Reply #2 on: January 18, 2010, 07:40:12 am »
I am not sure just how beneficial it was for me because I was not feeling well for a couple of months before I actually went for the Therapy but I was doing various exercises that I found on the computer under Vestibular Therapy and there was one exercise only that the therapist gave me before I left the hospital.  By the time I did go for my therapy he said I was doing pretty good so what I did at home on a daily basis several times a day worked I am sure people who have severe balance issues it would be very beneficial but it sounds like you are doing terrific in your daily regime. My main problem was with my eyes closed so I try to practice those if you would like more details on the exercises please let me know. I read alot of people are on the WII that sounds like a very good tool to use for balance and appears to be fun for all.

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

nteeman

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Re: Is vestibular rehab really necessary?
« Reply #3 on: January 18, 2010, 07:58:55 am »
I had very little balance issues before surgery and while I do have some issues post surgery they are minor and my balance has improved. In my case I never considered any therapy for balance needed.

Neal
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
Dr.Bederson & Dr. Smouha
9:30am thru 5:50pm
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Jim Scott

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Re: Is vestibular rehab really necessary?
« Reply #4 on: January 18, 2010, 02:50:55 pm »
Lyn ~

My knee-jerk response to the question your thread poses is: "it depends on the patient"

Realistically, in light of the information you've offered regarding your recovery, I doubt that vestibular rehab is 'really necessary'.  Immediately post-op, I did a lot of walking and such, including daily drives, and like you, had few-to-no problems.  I had a few 30-minute PT sessions (in my home) from a VNA PT specialist and after 3 visits, she said I was fine and didn't need her help anymore.  However, not every AN post-op patient has the same level of balance recovery and for many, vestibular rehab is a very reasonable choice.  Thus, the "it depends" caveat.  It's clearly your decision but I would venture to say that, considering your level of recovery, you could probably pass on 'formal' vestibular rehabilitation.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: Is vestibular rehab really necessary?
« Reply #5 on: January 18, 2010, 02:59:51 pm »
Lyn -

I'd at least see what exercises they suggest you do at home.

I had no formal PT - didn't see a need for it - but IMO the vestibular exercises my neurotologist gave me made a big difference in my balance post op.

If you want I can email you the exercises; they are simple to do and don't take much time.  Just let me know.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

loose screws (tightened)

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Re: Is vestibular rehab really necessary?
« Reply #6 on: January 20, 2010, 08:59:27 pm »
No.
47 Y/O. diagnosed AN After MRI. 4X5X7mm within the right auditory canal. Slight hearing loss, ringing in ear, vertigo. Middle fossa with House Ear Clinics Dr Brackmann and Dr. Schwartz on 11-16-09. 6 new tightened titanium screws but no more hearing.
http://mikessurgery.blogspot.com/

lawmama

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Re: Is vestibular rehab really necessary?
« Reply #7 on: January 22, 2010, 04:07:57 pm »
Thanks for the replies!

Jan, I would really appreciate if you emailed me the exercises.  I will PM you with my email address.

I have decided to skip the PT.  This week was a GREAT week and I honestly feel better than I have in a year (much better than I did the month or two before surgery).  I think that my balance was so bad pre-surgery (because of the damage to my vestibular nerve) that the other side had already compensated a lot. 
9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

jaylogs

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Re: Is vestibular rehab really necessary?
« Reply #8 on: January 22, 2010, 06:23:04 pm »
I was wondering that myself Lyn, I didn't have many pre op issues with dizzyness, but post op it has been a pretty consistant. I've been doing a ton of different exercises plus walking so now I am doing fairly good.  As Jim said, everyone is different...I imagine if I was constantly bumping into walls then I would be seeking help.  I just hope I'll be ok when I start back to work here in a couple of weeks!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

4cm in Pacific Northwest

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Re: Is vestibular rehab really necessary?
« Reply #9 on: January 22, 2010, 09:52:06 pm »
  Should I go at least once to see what exercises they want me to do on my own?  I should also mention that I'm doing the Wii-Fit Plus and I've made a TON of progress.

I would.

Know that some patients don’t even get a referral to vestibular therapy when they ask for one. Others who actually get a referral may go more often than others do -to the therapy sessions… depends on the patient. I believe if you get a good therapist they can send you off with a good self directed home program to follow- so it fits you schedule and energy level.

Once I FINALLY did get a referral I found the weekly request to return to the therapist’s office was not affective and I was, at that stage, making better recovery on my own plan.

(I also was not too terribly confident on the vestibular therapist I finally saw and did not feel the out-of-district fee was actually worth it being that I had to spend half the time explaining to the therapist what an acoustic neuroma was and what the symptoms were. Driving to the office seemed a waist of time for the little I was taught.)

Others have had great therapists… You may have to network with other patients to find one.

When I decided to research and devise my own balance recovery program I asked all the folks here on the forum for advice. This was the reply I got from all these FAB people here.

http://anausa.org/forum/index.php?topic=5584.0

You have to do what feels right for you.

Many have been raving about the Wii Fit balance program, her on the forum… so maybe you are on the right path already…

DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

moe

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Re: Is vestibular rehab really necessary?
« Reply #10 on: January 23, 2010, 12:16:59 pm »
Since you're not having real issues, I think what you are doing is just fine, considering how busy you are.
Maybe they can send you their recommendations or email? You can review and add to your routine as needed.
Just everyday stuff-walking, wii fit may just be all you need.
Good luck, glad to hear you are doing so well!
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Brendalu

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Re: Is vestibular rehab really necessary?
« Reply #11 on: January 23, 2010, 02:46:09 pm »
I spent a small fortune on PT to help my balance.  All I got was a huge amount of bruises.  I use a Wii Fit now and my balance has improved some but none of my doctors feel it will ever be 100%.  I don't think it ever was.  I have been running people off the sidewalk for as long as I can remember.  No one likes to walk beside me and I am okay with that.
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

Rick Everingham

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Re: Is vestibular rehab really necessary?
« Reply #12 on: February 17, 2010, 12:31:42 pm »
I had about a 6 week period of major balance issues before my surgery, in fact, before I knew I had a tumor.   Severe vertigo (2 trips to the hospital), walking in to walls in a hallway, falling down, falling down some stairs and so on.  This was about 9 months before I was diagnosed with my AN.   However, after about 6 weeks, it all went away.  Test after diagnosis and before surgery determined that I had no vestibular function on my AN side. That and my almost total hearing loss was a major factor in my decision to have a translab.  I have had no vestibular rehab before or after surgery and my balance issues are quite benign, when I am really tired walking a straight line is tricky, total darkness is an issue  (lots of night lights around the house) and I can't do quick 360 degree turns without getting dizzy, no pirouettes for me!
1.5x1x1.2cm AN surgically removed by Tans Lab Jul 30, 2003, McGuire VA Hospital in Richmond, VA.

Kathleen_Mc

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Re: Is vestibular rehab really necessary?
« Reply #13 on: February 19, 2010, 03:49:28 am »
After my initial surgery I wasn't even referred for physio., just went about my everyday life and things slowly go to a level of OK and that's where I've stayed. Funny though after my regrowth surgery I was referred to physio!, they saw me in the hospital and didn't have anything to offer that would change anything and the lady said even years before there wasn't anything they would have thought me I didn't already know/do
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

b91221b

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Re: Is vestibular rehab really necessary?
« Reply #14 on: February 19, 2010, 09:51:26 am »
Hi, Lyn...I'm 4 months post-CK.  At my last MRI/Doctor visit, I explained about the dizziness and balance issues...(I have taken a couple of falls..use the walls as a balance tool...stagger a lot).  He told me about the vestibular therapy, but also commented that he really didn't have much confidence in it...that most of the exercises I would need I could do at home.  The Wii-fit is a good idea.  We also have a treadmill, (but it's in the sunporch and it's still pretty cold out there), so when it warms up, I plan to begin using it again, with some exercises I found on this forum designed for balance issues.   (My supportive hubby says that I have to allow him to sit by my side when I use the treadmill, however!  Actually...I LIKE that idea!)   :D  Blessings on you!
Barbara