Wobble or limp!

[Echo]

I've noticed lately that my wobble which was more of an occasional "miss step" has started to change.  When out walking for any length  of time, my wobble is more of a wander now.  I tend to go from one side of the sidewalk to the other and back again and find I really need to focus on trying to go straight.   I've also noticed the farther I walk and the more tired I get, I actually start to limp.  What's with the limp??    If it gets to the point where I start to limp, then I'm usually feeling really wonky.  Luckily if I stop and rest, within a half hour I'm usually feeling much better. 

I've read many posts where people said they did lots and lots of walking after treatment - did anyone go through similar stages to what I'm experiencing? Did those who did lots of walking have balance issues?  I hope I can eventually enjoy longer walks without the struggle.  I see my vestibular therapist in 3 weeks and plan on discussing it with her. 

Cathie.

[Jim Scott]

Cathie ~

I'm sorry to learn that you're experiencing some difficulties in post-op walking.

I underwent both surgery (debulking) and, three months later, radiation (FSR).  I did a lot of walking during my recovery from the surgery.  Fortunately, my surgery took place in early June (2006) so I had all summer to regain my ability to balance properly.   It took some weeks before I could walk a relatively straight line.  My wife accompanied me on many of my walks (about a mile or two at a time) and gave me 'status reports', e.g. "you're drifting to the left" which were helpful. 

I never experienced a limp when tired so I cannot respond to that issue but I'm sure others can and will.  Perhaps it is not AN-related? 

My only advice is to be patient, keep working at it and in time your balance will improve.  I never regained 100% of my equilibrium but I peg it at about 80% which is quite serviceable but precludes me from tightrope walking.  Fortunately, I never wanted to walk a tightrope, so there is that.   

Jim

[Echo]

Hi Jim,

Well now you have me wondering - maybe what feels like a limp is a more exaggerated wobble. From inside my head it feels like I'm limping and when I catch myself feeling that way I try to focus on walking smoothly.  I should take someone with me on one of the walks to see what's happening.  I'm usually walking alone with my dogs and they just wander with me.  I often wonder if what I feel "inside my head" shows on the outside and is noticeable to anyone watching me.   

I'm sure things will improve over time.  Don't think I'll be doing any tightrope walking either, or for that matter jumping on a trampoline!

Cathie

[mesafinn]

Hi Cathie,

I identify with most things you put in your post--except the limp.  I go from side-to-side, and when I saw Dr. Cusimano, I completely failed the heel-to-toe test.  Repeatedly.

But I also experience the fatigue, and I cannot walk for long periods of time without starting to feel wonky.  I am optimistic it will diminish over time and with more vestibular therapy.

I marveled, too, at your full moon post as I was experiencing "extra wonk," and you put it into some context.  I asked my mother, who has a meningioma, if she experienced a particularly stronger headache than usual last week.  She said it was killer.  I told her about the moon....

Hang in there.  I am thinking of you!!  I validate the feelings "inside your head" versus what others might be seeing.  Their experience is not fully ours.

P.

[terisandler]

I can relate.  Over the last several years I have been told my gait was off.  After my AN dx I wondered if my gait issue was caused by my vestibular issues.  I now walk with a cane and my non AN side knee hurts.  I think it's all related.

[Nannybee]

No limp here, but I definitely wander. My gait after anything more than a few steps is all over the place and I absolutely drift to the left (my non-AN side).

[kathynicks]

I too cant walk straight its a combination of throwing myself with each step to half circles to swaying and weaving side to side try to find a focus point like i put sticky notes on my wall with an x than I try to walk to each sticky note then outside try to find something to lock your eye onto like a car taillight or a sign that will help a litle, the more you walk the better it gets but there will remain some of that permanently it is worse on uneven ground and absolutely worse in sand walking in sand is a challenging vestibular exercise

[chloes mema]

I, too, wander all over the place.  I told my neighbor if you see me staggering down the drive way it's not because I've been drinking.  She promptly replied, if you see me staggering down the drive way it is because I've been drinking!   

All kidding aside, I notice that I tend to drift more to the right side when I'm walking for whatever reason.  Occasionally, I still get that feeling of falling like someone has yanked the floor out from under me but things are getting better; I assume it just takes time.

I did mention to my doctor last week that the balance and dizziness is getting better, he said it's because my brain is compensating.  I wonder if that's due to my going to the gym several days a week and taking a yoga class once a week?  I know both those activities have helped.  At the beginning neither were easy but I can feel improvement! 

Have not heard of nor experienced the limp.  I know I can't walk real fast much less run anymore because it feels like the gyroscope in my head is going nuts.

Good luck

Karen

[Echo]

Glad to hear I have some company on the wobbly front.  When I first started this thread back in October I was noticing a change from the wobble to the wander.  In the past 5 months it has not improved.  Given I've reached the 6 month post Gamma period, I'm going to assume some of it is related to some swelling.  I'll confirm my suspicions once I meet with my neurosurgeon in two more weeks to review my recent MRI.

Karen, I think you have a good idea regarding the gym and yoga.  Now that the snow and ice are gone I look forward to increasing my outdoor walking.

Cathie

[ampeep]

I have a question - are you folks able to drive with your balance issues?  For the first time since GK I had to stay home from work 4 out of 5 days because I couldn't drive.  My wife drove me on the 1 day.  Have continued walking our two dogs, but feel much more tired afterward.

[Echo]

Hi Ampeep,

First off great question.  I would suggest making your question a separate post so you can perhaps get more answers as it's tucked in under my post for "wobble or limp".  Give it a heading Driving & AN or something similar and see what additional responses you get.

Six months pre Gamma I had to drive out of the city at night after dusk and head an hour north to a small town. I was okay till I left the city and ended up in the country with no other cars around me, no street lights and no buildings lit up to help me get my bearings.  I only had my headlights to use and I ended up with the most overwhelming feeling of nausea.  I didn't get dizzy, but my head ached and I felt horrid.  When I drove home later that same night, I had the same darn sensation until I got back into the city and then once I had lights around me I felt fine.   I have not tried driving in complete darkness since that evening.   

I'm now eight months post Gamma and daytime driving is still good.  Absolutely no issues!  I have to admit I have not tried driving alone or with someone in complete darkness - out of the city.  My balance issues are not good in the dark, so I just don't risk it. 

I also have two dogs I walk, and with the good weather finally here I'm trying to walk further each time.  Walking longer than 45 minutes is extremely tiring for me so you are not alone with that issue. 

Cathie

[ampeep]

Hi Cathie,

That was good suggestion; I just made a separate post.

The drive you had out of the city in complete darkness did not sound very pleasant.

My concern with driving is when I turn my head to reverse; that's when my balance really gets messed up.  You don't have any issues with that?

Keith 

[Echo]

I've always enjoyed driving and been very confident.  The night I wrote about when driving alone out of the city was very unnerving.   As for backing up, I don't get dizzy, but I find I do it a whole lot slower than I used to.  I have some occulormotor issues so I find I'm extra careful backing up and judging where I'm placing the vehicle. I avoid tight parking spots when possible.

I hope things improve for you soon.

Cathie