Balance test NORMAL, but I'm tipsy????

[Nancy Drew]

Hi everyone,

This one really baffles me.  I had two balance tests before GK, and they came back NORMAL.  I am post GK now (little over three months), and I have felt like I am a bit tipsy at times.  I feel a pull to one side, run into things, and just walk like I'm a little drunk sometimes.  And, I can't walk forward and look over my shoulder without stumbling!  I have had a couple of falls, but I think those were just because I was in a hurry and wasn't looking where I was going.  So, is it possible to have a NORMAL balance test and still wobble?  I guess I should have asked the doctor, but when he said NORMAL it was just nice to hear that word.  The balance issues aren't horrible, but it makes me wonder if minor stuff doesn't show up during testing.  Any ideas?

Nancy

[wcrimi]

I'm not so sure if their definition of normal is our definition of normal.

I can get around fine without any risk of falling. I could also easily pass a sobriety test. So maybe that makes my balance fairly normal.  But if I look side to side while walking heel to toe or close my eyes while doing that all bets are off because I'm going to fall. I am sure I could do those kinds of thing before surgery 12 weeks ago. So I don't consider my balance normal.

[MAlegant]

Nancy,
I'm confused--you had balance tests before GK and they were normal? And now post-GK you are having balance problems? Isn't it normal to have some issues after GK, when/if the tumor gets bigger before it dies?
Marci

[Nancy Drew]

Hi,

I felt a little tipsy before GK, but I would definitely say balance issues seem to be more noticeable since GK.  My doctor did explain that it is "normal" for little things to come up post GK that will resolve over time.  I had a MRI yesterday so maybe I will get more of a feel of the situation.  In addition to the balance issues, I have been having these weird sensations in my head that have gotten worse in the past month or so.  That bothers me more than the balance issues.  My neurotologist sent me to the radiologist, and she is the one who ordered the MRI.  I just might be overly sensitive at this point, but it sure seems like things are starting to crop up although they aren't disrupting my quality of life.... just bothersome.  I will post again once I get the results of my MRI.  Maybe there is some swelling (which I think is normal) that is throwing thing off a little.  The radiologist said a round of steroids might be helpful.  I took steroids about three weeks post GK, and they didn't seem to help much.  Thanks for the feedback.

Nancy

[ppearl214]

Hey Nancy! 

Pls keep in mind that you just had your GK 3-4 mos ago.. and as you researched, this is the timeframe that things could potentially crop up (not to say they will, but could).  I'm tickled you consulted with your team on this and I'm glad they are ordering the MRI to get a good look at how's it doing.  You can try doing a "search" here on the forum homepage for "vestibular exercises" as many posts over time have covered some of the exercises to help with balance issues (don't forget to check the Balance Forum as well.....).  Sounds like a true, potential case of "wonky head"... and you've read here much about it.  Me thinks that possibly could be it.

Please keep us posted on how you are doing... and hoping that all is on track

Hang tough!
Phyl

[Kaybo]

I'm with Marci ~ I thought that it was kind of expected that things (like balance) would get a bit worse AFTER treatment...

K

[Nancy Drew]

I was just looking at my initial post and realized that I failed to mention that I had a balance test two weeks ago (post GK) that came out NORMAL.  Marci, I can see where I confused you since I left out this info.  Anyway, since my post GK balance test came out NORMAL, it just baffles me that I have the balance problems.  I'm still not sure what "wonky head" is.  The weird sensation in my head is hard to explain.  About as close as I can get to an explanation is something that happened to me a couple of weeks ago.  I was on the 7th floor of a building and was taking the elevator down.  There were no stops from the 7th to 1st floor so the elevator was going pretty fast.  When the elevator came to a stop on the first floor it felt like my body from the neck down arrived first, and then my head followed shortly after.  Does that make sense?  These weird sensations seem to be worse at night....maybe somethiing to do with fatigue.  Hope to get to the root of the problem.  Also, I looked at the MRI yesterday, and I noticed that there were two very small white dots on the inside of the AN.  Does that mean anything?  The tumor seemed a little bigger than I remembered from my last MRI.  Anxiiously awaiting my doctor's phone call to see if there is any swelling.  Nancy 

[ppearl214]

Hi Nancy,

Wonky Head (I believe Captn Deb owns the rights for inventing the term, but it truly can be most applicable if it is the case....) as many have shared, in a round about way, is basically.... vertigo/dizziness with a "disconnect" feel (like when you have a cold/flu and take cold meds for it.. that meds disconnect feel)....

Phyl

[sgerrard]

Hi Nancy,

How are you? Oh wait, I guess you just posted about that. 

I had pretty thorough vestibular lab testing before treatment (no rotating chair, though). The report said I was basically fine, probably using that term unremarkable, but noted there were little bits of something going on. I think they are mainly looking for debilitating vertigo and the like, so if you are just a little wobbly now and then, you are normal enough. My main symptom is a brief loss of balance if I spin quickly, like turning and stepping off the back steps at the same time, while taking out the trash. I wouldn't worry too much about it, the stress of doing so probably just makes it worse.

Hope you are well otherwise.

Steve

[mk]

Nancy,

I think you are experiencing the typical "wonky head" syndrom. I also ran into it briefly at around 4 months - it was triggered by a viral infection. For me it felt like I had a couple of glasses of wine. And seriously it became worse if I actually had some wine.
It is encouraging that your balance test came back normal, so hang in there, and it should go away soon.

Marianna

[MAlegant]

Nancy,
Even though my balance should not be affected at all (they did not cut my vestibular nerve), I am definitely not well-balanced (no jokes here).  Especially at night and in the morning--I walk like a drunk--but once I get going I'm fine.  I do recall that my grandfather (now deceased) always had balance issues and I wonder if he had an AN, even though it was his heart that got him in the end, at 86.
Best,
Marci

[Nancy Drew]

Steve,  First of all I love your blue hat.  Good job!  Maybe you should quit taking out the trash!!!  Interesting thing is that I got really bad motion sickness on the two balance tests before GK, but I only got a little dizzy during the one post GK.

MK,  I don't drink wine very much but the last time I did I drank more than usual, and the weird head sensations seemed worse.  Maybe you are on to something.  Also interesting about the viral infection connection.  I think Steve said something about someone he knew losing their hearing after a viral infection.  BTY, Steve, did that person get their hearing back?

Phyl, I guess I will keep in mind the whole "wonky head" thing.  It seems like a lot of people describe it in different ways.  Do you think doctors are aware of these weird kinds of symptoms?  I am guessing that there are a lot of things other than hearing loss, balance issue, etc. (the usual symptoms) that might be left out of the literature.  I am wondering how data is collected for CK and GK side effects, etc.  The GK Center I went to has sent out two feedback questionnairs, but I am not sure what they are doing with the information....I need to ask.  My doctor said he gets his stats from Pittsburgh.  However, a woman I met on the board who had her GK at Pittsburgh six months ago hasn't had any questionnairs sent to her.  Just curious if all GKers and CKers are giving feedback to their doctors.

The sensations seem to be less frequent for the past couple of days.  Perhaps a good sign that whatever is going on inside the ole brain is passing on.  I am waiting for the results of the MRI I had last week.  Hopefully all is well in there.  I realize I am still a newbie postie so it is possible that I am just super alert to everything right now.  Is there anyone reading this who is down the road a bit (say, a couple of years) who can say they are no longer having any new issues coming up.

Thanks for your support.

Nancy

 

[sgerrard]

Although I am 6 weeks shy of being 18 months post treatment, I feel like I am "down the road a bit." Maybe just getting older, of course.

It certainly seemed to me that by about 9 months, the course was set, and there were no more surprises coming at me. I still get variations in symptoms, but they are a familiar bunch, like my old school friends, and I really don't mind much when they drop in for an unexpected visit. As long as they don't stay too long.

The friend you mentioned had sudden hearing loss in one ear, never recovered, and they chalked it up to a virus because they really don't know what caused it. I met her some 15 years after it happened, and she was completely adjusted to it.

Steve

[stoneaxe]

Nancy...part of the video that I posted in the standup paddleboard thread that hit the cutting room floor was of me falling off the board because I turned my head to quickly to talk to a birdwatcher that was on the dock (a very rare artic ivory gull was in town that day). That was the only time I fell off in 1.5 hours of paddling. My balance was fine that day except for that brief moment.

I always referred to the "wonky head" feeling as the bobble head effect when explaining it to non AN-ers. Just like the bobble head dolls it feels like my head is floating around and is 5 sizes too big....

[Nancy Drew]

Thanks to all for sharing.  It is nice to get a sense of what is happening to all of you post treatment.  I am beginning to realize that I am learning to deal with my balance issues.  I have noticed that I am holding on to rails more often when walking down the stairs, and I am taking things a little slower.  Also, I am now using poles when I snowshoe, and not only is it better exercise, it helps greatly with the balance.  As for hearing, I am adjusting little by little....or maybe just "accepting" what is reality.  I feel so lucky because I have my pre-treatment hearing, and I know that it will be a part of my life to ask people to repeat or speak up.  Now if I can just get rid of this headache that has been hanging on for the past couple of days.  What a glorious journey this is!!!  Nancy