Six weeks post-op update

[CHD63]

Liz .....

I'm glad you posted what you did about work vs. vestibular exercises.  I rarely do the prescribed exercises now, but do exactly what you said ..... repeat the offending movement/activity.  Somehow that seems to retrain the brain further in our normal day-to-day activities.  I, also, was pleasantly surprised to find out driving is much easier than walking.

As for movies, I rarely go to the theater because it is just too much stimulation, both noise and vision-wise ..... unless I go very early before they turn off the lights to find a seat in the middle of the theater ..... and put my musician's earplug in my good ear.

Glad both you and Karen are back to work ..... even if it seems stressful and tiring right now ..... it will get better!

Thoughts and prayers.

Clarice

[lrobie]

I was very excited to be going back to work, but feel I may have went back too early.  I did not go to physical therapy all week.  I would do a few things here and there on my own (more of the eye movement exercises).  Nothing seemed to help the feeling I have.  The only way I don't feel this way is if I'm sitting with my head still.  As soon as I move it, I'm reminded of the wonky head.  So driving hasn't helped me to improve.  I'm not sure what I will do when the time changes and it's just about dark by the time I leave work. 

Another thing I  noticed was that while my head is still, I can move my eyes around and not get that feeling.  I'm trying to keep a positive attitude, but it's hard some days.  I need to keep telling myself that it has only been 8 1/2 weeks since surgery and full recovery takes a lot longer.

With all that said, I have been able to get on the regular bike we have set up in our basement that is propped up using the Cycle Ops system.  I swing my leg over to the other side and don't feel like I'm going to fall off.

Thanks for your responses and for listening.

Lisa

[LizAN]

Clarice, Where did you get your musician's ear plug?  My good ear is starting to hurt sometimes and I want to head this off, if possible.  I have been listening to audio books during my long commute.  The sound system in our old van is not very good.  I am sure it is making things more difficult, but a good story makes the commute much more bearable.

I am under a ridiculously tight deadline at work and have actually put in overtime this week.  I have a late night meeting in a hour with our team in China, and I truly just want to lie down on the sofa and go to sleep right now.  It is not easy to recover under these circumstances, but at least work is a good distraction.  I am wonkier this week than I was last.  I am not paying attention to some things that I should, such as getting enough fluids and enough rest, much less exercise.

I left work late yesterday and almost didn't make it home before dark.  I have purposely not tried driving at night, yet, and I don't need to find out by accident that I can't do it, and be stuck miles from home.

We each improve at our own rate, but I do think I'd have been better by now if I'd been more diligent about my vestibular exercises.  Then again, maybe not.  If we don't work hard enough at recovery, in the beginning, can the brain just decide not to compensate any more?

Lisa, I hope it gets better for you soon.  I'm concerned about the time change, too.  Maybe we will be better by then.

Liz

[CHD63]

Liz .....

My audiologist had to make the mold to fit my good ear, but I have an Etymotic musician's earplug with a 15db filter in it.  See:  http://www.etymotic.com/hp/erme.html  She ordered it for me three + years ago and I think it was about $45 out of pocket for me.  Money well spent!  I keep it in my purse and/or with me at all times (in a little case).

My "good" ear is my right ear.  Thus, when my husband is driving, the hyperacusis causes a disproportionate amount of road noise to my right, making hearing him on my left very difficult even with the Ponto.  Using the earplug eliminates the annoying high frequencies and I can hear him just fine through the Ponto and filtered normal right hearing.  Much more fun to travel when you can converse with each other!   

The other time I use it the most is when I am in noisy environments such as loud restaurants, etc.  It is also handy for loud concerts and movie theaters.  It does not muffle my ability to hear, just eliminates those painful high frequencies ..... and I want to protect the hearing in my remaining ear at all costs!

Clarice

[lrobie]

Clarice,

Do you think the musician's ear plug would work in the bad ear...the ear that is extra sensitive to all these sounds?  My problem is that I've been using the cotton in my bad ear which then makes it even harder to hear.  I still have about 60% of my hearing in that ear.  When I researched hyperacusis, it states that you shouldn't use the cotton because over time, you become even more sensitive.  I've been trying to go without it, but it's very difficult as the noises seem be getting even louder.  More and more sounds are getting irritating...laughing, son's voice, toilet flushing at work, shoes hitting the floor while walking.

Liz,

I believe that because I haven't had as much time to do the vestibular exercises, it has caused me to take a couple steps back and the wonkiness is worse.  I'm not even sure if they coorelate.  I'm going to have to post some questions about this and another issue.

Hang in there...I'm trying.

Lisa

[CHD63]

Lisa .....

Yes, it is true that you should not use any muffling-type device constantly.  That's why I only use it in the car on road trips and in very noisy situations.  However, the musician's earplug only filters out the harmful frequencies so not the same as putting cotton in your ear, which muffles all frequencies.

Therefore I think the musician's plug would be beneficial in your affected ear.  Talk with your audiologist about it, though.

I keep an old pair of ear protectors in my kitchen to grab and put on when using the blender or unloading the dishwasher, etc.  My husband knows now to leave the room to open crinkly paper bags, etc.  Still have to remind the granddaughters not to squeal right beside me. 

Normal everyday sounds are things I am just learning to put up with ..... and like the tinnitus, sometimes I can successfully tune it out.

Thoughts and prayers.

Clarice

[james e]

Recovery is a S L O W process. Do not loose faith...sounds like you are improving. It really gets better, and you will live a wonderful life. I am 30 months post-op, still wonky 24/7, but I am used to it, and it even gets kind of funny sometimes. Just put your head down and keep moving forward.

James

[It is what it is]

Another week post surgery.  How are you all doing?

Karen

[LizAN]

James, Sometimes, it is hard to be patient.  Thanks for the reminder that this is a slow process.  Did you do vestibular therapy?  I hear there is one good therapist in town, Bridgett Wallace at 360Balance.com.  Was she your therapist?  I'm wondering whether I should call her.  I need to see if she takes my insurance.

Clarice,
Thanks so much for the link to the Musician's Earplugs!  I plan to discuss them with Dr. Briggs tomorrow, when I see him about getting a BAHA.

Lisa,
I am finding that fatigue makes me much wonkier.  Since I started back to work, I have slipped into using caffeine and sugar to boost my energy, but they are only making things worse.  I don't feel like recovered much over the weekend.  This is likely to be a very long week.  Time for me to get back on the straight and narrow, at least in some respects. 

Karen,
How are you doing?

Liz

[It is what it is]

It's always good to hear how things are progressing for you. 

The fatigue thing has me humbled.  I really can't work and do vestibular exercises in a serious way on the same day, so I try to do exercises and activities on the weekends.  I purchased an inexpensive disk to stand on.  It has a half circle attached underneath and I have found this to be a very helpful balance exercise as I try to stand on it without falling.  Paddle boarding is also great but it takes a lot more energy to get up to one of the lakes in order to do it.  Kayaking was fun on Saturday but then I was in bed the entire next day. 

Please keep the updates coming.

karen

[LizAN]

If we don't do our vestibular therapy, does the brain at some point decide not to compensate any further, making it too late?  Or should we just relax about this whole thing and do what we're able to do?

I'd really like to do stand up paddle boarding next summer, when I have more energy than I do right now.

Are you doing formal vestibular therapy, or just the exercises that House sent home with you?

Liz

[It is what it is]

That is an excellent question and I'd really like the answer.  I'm doing exercises I received from Clarice, and a local wonderfully helpful AN postie and exercises I downloaded after doing a search for vestibular exercises for acoustic neuromas. 

Karen

[lrobie]

Liz and Karen,

I have to admit that I didn't always do my vestibular exercises when I was still home.  I also didn't walk as much because I believed with my husband getting me out and about, that would make up for it.  Now I question whether I haven't progressed as far as I think I should have because of that.  I have read on the forum about people who stopped doing their exercises only to be going backward in recovery. 

According to what I've read in the Improving Balance booklet, the brain needs to be challenged often so that it makes those adjustments.  If you're not challenging it, your other balance mechanisms are used rather than your inner ear vestibular system.  However, it reads that you want your inner ear vestibular system to be the priority or main form of balance.

Now that I know this, I'm working harder at those challenges and am optomistic that I'll see progress.  I'll let you know how that goes.

Take care,

Lisa

[HoosierRick]

Just thought I would throw my 2 cents into the discussion...I am about 9 months post-op and I still deal with some wonkiness at times.  Believe me though, it gets better.  When I went back to work, I also felt like it took me a few steps backward...but you have to remember that you had major surgery and your body takes time to heal...after a few weeks of working I started feeling much better.  The work stimulates your brain and your senses.  I now work-out 3-4 times a week...run 10-12 miles a week...and try to play basketball once a week.  I will admit that playing basketball has been the hardest thing...all the movement and coordination really excentuates (sp) my wonkiness.  It is great vestibular therapy for me.  Don't let little setbacks set you back...keep pushing forward and it will get better.   

[It is what it is]

Thanks Lisa and Rick,  you are motivating me to try to add exercises back into my work days even though it makes me feel wonky.  I so much want to continue to improve.  Work is better this week.  I love this discussion list.  Thanks!!!

karen