Author Topic: abnormal feeln (smile)  (Read 3717 times)


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abnormal feeln (smile)
« on: February 02, 2011, 05:26:47 pm »
does the drunk feeln ever better?  struggln with it tryn to walk straight and all, just wondern has anyone that has experience this feeln ever improved
4.5 cm retro surgical removal dec 06


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Re: abnormal feeln (smile)
« Reply #1 on: February 02, 2011, 07:00:37 pm »
Yes, it most definitely gets better! You just had surgery and it takes time for the body to recuperate. Has your doctor suggested vestibular rehab to help your good side compensate for the loss of balance on your AN side? If not ask him about it. I used a walker after surgery and after a month of rehab I no longer needed it. It takes time and practice and patience.
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010


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Re: abnormal feeln (smile)
« Reply #2 on: February 14, 2011, 09:28:52 am »
I now there may be some other forum members who's balance issues were resolved with the surgery. From my experience (and it's been 1 year for me so far), the "feeling" has not gone away. My brain has tolerated the feeling, and has gotten better at tolerating it  ;). I don't like to use the word (for me) "compensate" anymore because to me I felt it was giving more credit to my situation than warranted.

On the surface, I'm "almost as functional" as I was prior to surgery, from an athletic point of view. I still can go for hikes, lift weights, sprint, shovel lots of snow  >:( ..... but how I feel on the inside, and how intense I can make the activity before my head starts feeling like it wants to take a nap (or practice couch potato activity).... not the same. My endurance levels are reduced because after too much intensity, my head is just not up to the task. You probably couldn't tell much of a difference by observing me during the earlier timeframe before I start getting tired.

Nonetheless, now that I'm more aware of my limits, I am trying to raise their threshholds. Technique, conservation of energy, and pacing .... has enabled me to shovel snow for many hours (2-4) .... my teenage powerlifting sons get tired before I do.

But I won't kid you .... although my brain has tolerated (or "compensated"), the "feeling" is still 100% there for me (may vary with you, as I mentioned I know one poster who told me balance issues were gone .... happy for her!) .... as for me, the feeling is sometimes better (rarely though) than when I first experienced balance issues, sometimes worse ... but mostly the same. But I have built a tolerance to the feeling, and can function as if I have no balance issues.


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Re: abnormal feeln (smile)
« Reply #3 on: February 15, 2011, 11:08:01 am »
CF, you know I also just feel more drained (I had CK not surgery).  I find I don't want to go out as much, and am content staying home on a Friday/Saturday night reading or watching a movie.  I tire mentally more easily.  From what I've read and been told, the brain is really working overtime compensating for this loss of balance, and that it's normal to feel this fatigue.  When the nystagus started last May, I kept saying I felt like I had Brain Fatigue, and nobody knew what I was talking about.  I just wanted to lay my head down and not "think" to have a conversation.  I do find my energy comes back the longer between episodes of the nystanus and I do really think there is something to the brain overworking.
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys