Vertigo and balance issues pre treatment

[joanna_an]

Hi all...

In October I had two vertigo attacks in two consecutive days and had balance issues, dizziness.. I thought I had fever but when I went to my GP my temperature was normal.. I asked the GP to send me to the specialist as I felt something is not right in my head... Turned out I had an AN.. Dizziness lasted for about two weeks or so.. I was walking like on a boat.. Combined with clumsiness.. Now, I feel perfectly normal.. Both surgeon and the radiation oncologist think that I might have compensated already.. The surgeon tested my eye reflexes and said they are perfect..
My radiation oncologist said he doesn't want to treat me cause I am young (31) and surgery is better for me but he'll do it anyway if I want to.. Surgery might be planned for February.. Apparently I am not an urgent case..
So my question is.. From all of you here, did anyone experienced the balance and dizziness problems etc before the treatment and if they got fixed before treatment, were there balance problems after treatment? I am mostly referring to surgery..
I am hoping that if I compensated already I'll be good after surgery..

Joanna.

[davecz]

Hello Joanna,

Interesting to read about your balance issues and quick diagnosis. What you experienced is almost exactly the same issue I had about four years ago. I woke up one day and couldn't even stand up. I ended up crawling around for a week. I did go to my doctor, but he sent me home to rest stating I had a viral infection. Those symptoms persisted for about a month the dizziness improved over time. Can't remember exactly how long it took before I felt better, but it did clear up.

Unfortunately for me, they didn't diagnose my AN until almost two years after the dizzy symptoms. I lost my hearing (90%) in my right ear, which prompted my ENT to order an MRI. And that's when they found it. Due to the tumor's size, surgery was my only option. I had my surgery April 27, 2012 (trans lab) at HEI in Calif. they removed 100% of the 3cm tumor after a ten hour surgery. My recovery went really well. Aside from an excruciating headache and my total hearing loss, I walked out of the hospital three days post op. I had very little balance issues. My surgeon was pretty sure that my vertigo issues, from two years prior, was most likely a result of the tumor damaging my balance nerve. And that over time, my body compensated for that loss of nerve function.

My recovery continued to amaze my surgeon because I didn't have any balance issues. I was on my motorcycle one month post op and was back in the gym after a few months. Sure I had a lot of issues most patients have, ie., persistent headaches, bad tinnitus, nausea, etc., and recovery was no cake walk. However, I never had an issue with my balance. Obviously this may not be a guarantee that you will have the same success, but I'm just letting you know that my symptoms were similar to what you experienced. So I do hope that you will walk out of the hospital three days post op and not have any balance issues. From what I have read, it's very frustrating for many AN patients to deal with these balance issues.

I wish you the best with your surgery and recovery. Feel free to pm me if you have anymore questions.

Davecz

[joanna_an]

Hi Davecz..

That's interesting.. I can also walk around now without looking down at the ground.. I used my eyes too much for balance.. I am really happy and delighted about your recovery.. Sure that doesn't mean that I'll be necessary ok but thanks for telling me your story.. I have a balance test on the 16th. I think I might know then if I have any balance in my AN ear and how well I have adjusted..

Joanna.

[arizonajack]

I never had the vertigo or dizziness but I did have the "walking on a boat" feeling of lurching side to side.

That started around the middle of December 2011.

I had my GK in January 2013 but had already been experiencing some improvement in my balance toward the end of 2012.

I think, after a year of balance issues, my good side was already compensating for the deficiency on the AN side.

I went to vestibular rehab twice just before GK and 4 times just after and that helped, too.

I'm almost completely without balance issues now, other than the infrequent incidents of maybe turning too quickly and having to correct.

I was recently able to walk briskly through a particularly winding hiking trail with a lot of uneven ground without any balance issues.

[joanna_an]

I didn't go for any vestibular rehab sessions.. I didn't really care much about my balance issues as I naively thought that surgery will fix things up for me.. So I just continued my normal life.. I do go to the gym 2 times a week and swimming about 2 times a week plus I have the habit of walking 20 to 30 minutes after lunch everyday at work. So obviously, without knowing, I solved my balance problems.

[kcarloy]

I had balance issues for about a year before translab at HEI. I continued to work FT and have an active outdoor life. I felt like I had compensated fairly well during the last year. After surgery, the first couple of days were rough. But on the 3rd day I rapidly recovered balance, I am out walking 5miles a day and driving without issues since the second week post op. From posts I had read, I started daily walking after work and vestibular exercises for 6 weeks before I had surgery. I think this made my recovery easier. I occasionally have a mild headache that I rarely take tylenol for, and take a few short rests throughout the day. My balance at 3wks post op is better than before surgery. I can now look behind myself when I walk and keep walking straight!

[arizonajack]

I can now look behind myself when I walk

Good idea. Make sure nobody's coming after you.
 

[kcarloy]

Haha exactly!

[chopper]

From all of you here, did anyone experienced the balance and dizziness problems etc before the treatment and if they got fixed before treatment, were there balance problems after treatment? I am mostly referring to surgery..

Yes, and it sucked.  You compensate for all this way more than you realize.

"I am hoping that if I compensated already I'll be good after surgery.. "

Initially after, no.  It'll be one hell of a ride more than likely.  On the positive side, it'll be over in a matter of weeks.   Years later, I still have balance issues daily.  However, it's just when walking, but that's it.   Even then, it's not all that bad, just minor wobbles and course adjustment (heck, I've climbed Pikes Peak since surgery if that means anything).

I imagine there are more than a few occasions were someone's been behind me and thought "wow, looks like someone's still a little tipsy from last night" 

[kcarloy]

I am 6 wks out now from translab, walking  better than preop, no headaches, walking 25 steps straight with my eyes closed, and a heck of a heel/toe walker! Everyone recovers at different rates, I believe you are already well aimed for a great recovery due to your walking and activity preop. Think positive, there are always bumps in life! Karen