Response to Vestibular Therapy after one month

[NYLady]

Hello my friends,

I have been undergoing vestibular rehab therapy for about a month now, and thought I would report my response up to now.  Honestly, I think I am getting worse.  My balance and gait were really bad when I started.  Dizzy when getting up out of a chair, or after sitting for more than 15 minutes and staggering, lurching like I had a few too many glasses of wine.  Dizziness on rising seems to have lessened somewhat, but after my one hour sessions, I have been feeling really sick.  Headache, fatigue and even a bit more dizzy and nauseous if that is possible.  Asked my therapist about this reaction, and she told me it looks like we are getting to where we want to be!  What.....but I feel worse.   She is very encouraging in that she assures me, this really is a good response...shows something is changing.  Have to say, I am having some doubts as to whether this will help, but I am not going to give up.  I am wondering if any of you guys who have undergone this therapy had similar symptoms prior to improvement.  They have been adding some different exercises each week....now we not only do gaze stabilization, but walking a balance board (on foam), a rocker board from side to side and front to back, steps, etc.  Also have some gaze drills to do at home three times a day.  I firmly believe in trying anything we can to improve whatever symptoms we remain with after treatment (I had Gamma Knife to the cochlea, which I was told would further impact my balance issues and it did.  Not right away, but after about three months).  Hearing was lost completely in that ear as well over the same three month period.  No surprises, but frustrating to learn to adjust.  I now have new hearing aids (Phonak Audeo with Bicross) and they have enhanced my hearing dramatically, which is a real blessing for me.  So, it is not all negative at this point, and I remain hopeful the rest will resolve in time to some degree.  Like all of us, not expecting perfect, but hopeful for better.

Hope everyone is doing well.  Gotta just keep on keeping on....

NYL

[Echo]

Hello NYLady,

I spent one year doing vestibular rehab immediately following my GK treatment and my experience was very similar to yours.  My dizziness, headache and nausea was so bad after my 1 hour sessions that I requested we cut back to 1/2 hour sessions.  My sessions were first thing in the morning and I had to drive to work after.  It would be noon before I would get over the headache or nausea. 

My balance was "off" and I did a substantial amount of wobbling during that first year post GK, but what I struggled most with were ocular motor issues. In my case everything around me moved when I walked. Buildings, signs, lighting, everything that should be stable moved when I walked.  At it's worst, even standing still looking at a full moon was difficult as the moon bounced around.  It drove me crazy!! I had all the gazing exercises to do and did them multiple times a day. It was a long slow process but gradually I improved.  Thankfully when I was sitting or driving, everything was stable, it was just something to do with head movement while I walked.   

Don't expect a quick recovery with vestibular rehab.  It takes time.  There were weeks where we would go back and do things over because I just wasn't ready to move forward.  In my particular case, I was at my worst roughly 6 - 12 months post GK.  This was also during the time that my AN did swell.  Over the following 6 months as the swelling receded, so did many of my symptoms.  At the 1 1/2 year mark post GK (during this past winter) I noticed my ocular motor issues were 90% improved and I was no longer participating in vestibular rehab. 

Cathie.

[NYLady]

Hello Cathy,

Thanks so much for your reply.  I expected it would be awhile to see progress, but I am surprised at how much I seem to go backwards with worsening symptoms.  It really helps to know things do get better, no matter how discouraging they may be at the outset.

I had GK exactly one year ago at the end of July, so I still have a ways to go.  Will be having MRI in two weeks for the one year check, and we'll see exactly what is going on in there.  At six month mark, they did see a dark spot in the middle of the tumor, so hopefully, this report will be a good one too.  As I said, my symptoms are no surprise.  My doctors advised me fully in advance of treatment what could happen, although as all of us have been told "everyone is different, with different outcomes"  and we have to be "patient".  Have to admit though, your symptoms seem to be more daunting than mine.  I am perfectly fine sitting down, driving or doing anything where I am not moving.  Therapists did mention ocular motor symptoms to me as well in the planning of my treatment.  Hopefully, my outcome will be as good as yours.

Thanks once again for sharing your experience with me.  It helps.

NYL

[Echo]

Hi NYLady,

I have to say that overall I'm very pleased with the outcome after GK.  The only really daunting issue was the ocular motor problem and that was the one thing that I didn't read much about.  It did not appear to be a common side effect.  Thankfully, things are progressing just fine now. Be patient and give yourself some time, I'm sure you will find improvement over the next year.

Cathie.

[ampeep]

Hi NYLady,

I tried doing some vestibular rehab exercises last year.  I felt more dizzy and queasy right after doing them, but it seemed that the negative effects lessened after a while. 

Seems as though my balance is a bit better & my hearing has been getting better slowly.  It's been a year since my last Dr. visit, so I have a MRI scheduled for tomorrow afternoon.

Hope your symptoms improve as time goes by.

Keith

[Troutbc]

This is normal! I am 3 months post-op and after all of my physical therapy sessions I was dizzy, nauseous, and exhausted. Losing a vestibular nerve is a major adjustment for your body, so anything that challenges it (as rehab is supposed to do, and challenge it hard), will worsen symptoms. No pain no gain, right? But this is very normal. When my physical therapist had me doing gaze stabilization exercises with the checkerboard background, I got so dizzy and nauseous that I actually started sweating! She took my blood pressure and it was through the roof!

It gets better though- I have been out of PT for 6 weeks and am basically back to normal. I still do my at-home exercises 3 times a week with no issues- just doing them to stay sharp!

[NYLady]

Thanks Trout,

Actually, I am beginning to see improvement.  My routines with the therapist are ratcheting up and my symptoms afterward do not last as long.  Sometimes the dizziness comes with a vengeance, accompanied by nausea, but it is lessening.  Your comments shows me light at the end of this very long tunnel.  Thanks again.

NYL