Vertigo vs Dizziness? It's different...

[spgreenfield]

I am a month post-op and still very dizzy.  My surgeon removed the tumor and my only support is local family doc.  I went yesterday in hopes of getting a referral to a balance therapist...hoping.  I have mild facial weakness that's making vision a bit dicey (blurred vision if I use ointment, or constant application of drops....  My face is improving as is my eye...but my head is still very "wonky" and I don't feel safe to drive.  I can walk but I have to ignore the dizziness to do it.  It's a very spacey feeling but my balance is great!  I can stand on one foot for a decent amount of time and do the toe-to-heel drunk walk almost completely without help (prior to surgery it was laughable when I tried to do it for the surgeon!)  I'm trying not to be impatient or disappointed but when I read about others running and driving shortly after the surgery I get frustrated....

Pam

[james e]

Don't get frustrated. It won't help you heal any faster. I am 2 years post op and still wonky 24/7. It took me at least a month before I  could drive, but it is still difficult for me. I cannot walk in the dark because I get disoriented about where I am in space. Vision is the key to my horizontal and vertical. I can balance on one foot also if my eyes are open. Try it with your eyes closed. Healing from the surgery goes a lot further than having the stitches out. Your brain has to learn where you are...it takes a long time for some of us. Some  people bounch right back. You and I are just taking a little longer. It may take you months or even years to heal. Be patient. Stay here and we'll help you through.

James

[Jim Scott]

Pam ~

I'm sorry to learn that you're experiencing these post-op problems.  However, they're not uncommon.

Vertigo is when you feel as if objects/the room is spinning.  Dizziness is when you feel 'lightheaded' or, as we often say: 'wonkyheaded'.  I'm not a doctor but I suspect that your brain is adjusting to now having only one-sided input.  That should resolve by itself but the time frame is a bit different for each AN surgery patient.  For some, their hearing was so compromised prior to surgery (due to the undetected AN) that their brain had already adjusted.  For others, balance exercises helped (that would apply to me).  The best healer of all is time.  I would suggest that you try to avoid comparing your recovery to that of other AN surgery patients because there are so many variables involved that an accurate comparison is extremely difficult to achieve and so, not worth doing.  Instead, just keep looking for small amounts of progress that eventually add up to complete healing and you'll get through this O.K. 

Jim 

[cindyj]

Yes, do try to be patient w/ yourself and your recovery (though we know it's very hard).  Though I was driving about a month post-op, it was very limited and I made sure I only had to make right-hand turns and didn't need to back up   I certainly didn't get out on the highway, but just had to get out of the house on my own a bit. 

I had significant wonkiness/dizziness post op and found it very difficult. However, I made myself walk and walk and walk to get my brain used to things and it really did pay off.  Oddly, many here have noted that running/jogging is actually easier than walking. Though I'm not a "true" runner, I do find that I go much straighter and am less likely to wobble when I'm jogging...out on the street or a trail that is...put me on a treadmill and it's a different story  

As Jim notes, try not to compare yourself to others, but just take heart in the success stories and know that there is great life for you post AN surgery aslo, in its own good time

Cindy

[spgreenfield]

Thanks all for the encouragement...james e - I did try with eyes closed and promptly began to go over....so I guess it's vision based....

I'm going to start walking I guess - maybe multiple times a day since my strength won't/can't tolerate LONG walks yet - and it's winter temps here so long walks could freeze me!  Once I can drive I might be able to get myself to one of the old local malls to do indoor walking...but for now the sidewalks are clear of snow and I can walk safely!

Would SO much like my left eye to get its act together though!!!  I can smile a curved symmetrical closed mouth smile and make my cheek rise to match the other one - and ALMOST am able to close my AN side eye and keep the other one open....just barely open but still open.  It would be so nice to see clearly without drops, ointment or holding my eye closed!!!!

For those savvy to this - what would your walking regime look like?  I DO have a treadmill that I CAN walk on without holding on....but it's so boring.  My eyesight isn't good enough to watch TV while on it or read....guess I could listen to music?

Pam

[LakeErie]

Monday of this week was my 4 month surgery anniversary and I am fully regaining my ability to stand and walk without lightheadedness. It was a very gradual process and change was not notable
day to day, but readily apparent on a  week to week basis once I started walking and adding head movements to the walks.
At my Jan 16 surgical follow up, the surgeon OK'd my return to running as I felt able. I am able to alternate minutes of walking and jogging now without any difficulty and will gradually extend the the length of the jogging intervals until it is all running.
I found sitting for any extended period made the lightheadedness worse when getting up, so I started moving around on a regular basis and found it helped. Just a quick trip around the house  for a couple of minutes every 20 or 30 minutes helped over time. In my case, it seems it was necessary to challenge my balance system a few times a day to keep it compensating. Good luck with the rest of your recovery.

[spgreenfield]

Lake Erie,

I had wondered about that since my dizziness seems worse right when I get up - and seems to lessen over time that I am mobile...wish I had one of those annoying timers that will beep every so often to remind me to walk around a bit....as I'm feeling better I'm planning baking projects and cleaning and sorting projects...so that should keep me busy and active.  The horrible thing about my AN diagnosis is that it came only 2 weeks after having a long distance move - so as I SHOULD have been settling in to the new house I wasn't able to balance well enough to walk around carrying boxes or items to put away - and my attention span was horrible too - I was having to concentrate on staying upright  so much I'd lose my train of thought....and then there was my daughter's wedding a month afterwards....so I had way TOO much on my plate prior to surgery....but I'm SO GLAD I waited until after the wedding and the holidays to have it done....my husband was rushing me into doing it earlier but I put my foot down and said no - and am so glad I did!  I was raised in Erie, PA - just curious as to why your moniker is Lake Erie....

Pam

[LakeErie]

I timed my getting up and around for indoor walking with commercials when watching television, and with every other chapter when reading, as those were the times when I was sitting the longest. I also walked figure eight patterns three times a day - morning, afternoon, and night.
Then I walked outside daily, extending the length of time gradually and worked up from 15 minutes to 45 over many weeks.
LakeErie is simply a geographical reference to my backyard. I live west of Cleveland right on Lake Erie, and grew up in the '50's and 60's in a town further west and on the Lake.

[spgreenfield]

That helps!  A LOT!  And we lived in Solon for about 14 years....know your stomping grounds fairly well.  Used to race sailboats and Mentor was one of the spots we'd race from back when I was a teenager....

Many thanks.  Will begin a regime tomorrow.  The figure 8's....is that a balance exercise?

Pam

[LakeErie]

The figure eights were a balance exercise for me. At first, three of them made me somewhat dizzy.
Every few days I was able to do a few more 8's before getting light headed. I did them in a long hallway so there was a wall near me. Ultimately I could do the 8's without a problem.
I grew up in Bay Village, Sam Shepard's house was just past Huntington Beach and George Steinbrenner moved into the new house across the street from ours in 1957. He lived there for almost 14 years.

[spgreenfield]

I drove this morning!!!  Went when the traffic was very light and only drove about 10 blocks from home to the grocery store....I feel like a new woman!  I also went online to look for vestibular retraining exercises and did some before going out - what a difference!  It's only 1 outside right now so I won't be walking outside today...but walking in my long hallway turning my head side to side when I walk and then up and down on another pass until I'm worried I could get motion sickness and not to overdo it has given me much confidence and I swear I think it's making me more stable on my feet!!!

Thanks to all of your comments and suggestions, and much encouragement!

Pam

[CHD63]

Yaaaay for driving again.  I was terrified to drive at first when I was still so unstable walking.  My husband convinced me to try it in a big empty parking lot.  I was pleasantly surprised to find that it was very easy.  The hard part is still walking, not driving, because I'm not moving when I'm driving.

The exercise you are doing by walking in your hallway was the best one for me.  Another good one for gaze stabilization is to put a sticky note on the wall at eye level with a large letter (like A) marked on it.  Stand back from it about six feet.  Hold your vision on the letter while slowly moving your head back and forth and then up and down.  Gradually increase the speed of head movement as you are able to still hold your gaze on the letter.

I have several other good ones that my vestibular therapist gave me if you would like to have them.  Just send me a PM and I can PM them back to you.

Clarice