How much wonky balance is too much?

[phantagrae]

I have had some balance issues since probably before my diagnosis, though I wasn't sure what was going on.  Looking back, I suspect that my AN was affecting my balance in some way, just not in a major way.

I had radiation back in 2013 and it seems that since then I have more issues--I tend to veer to the left (right side AN) and have developed the habit of keeping my left hand touching the wall as I walk down a corridor to keep from running into it.  My dad noticed that I have kind of a wobbly walk, and I tend to have to kind of catch myself by crossing one foot past the other to catch myself sometimes.  I've noticed that at home I've taken to pivoting on my heel in order to turn rather than picking my foot all the way up as I move, holding on to furniture, etc.
I also find it hard to look around while I'm walking, like at displays or shelves at the store.  It can make me feel like I'm going to tip over.

It's not extreme and I've sort of gotten used to it, but I know that it's going on.  I don't guess I was ever asked about it by my ENT, though I think I've mentioned it in my check-ups with my radiation doctor, so I'm wondering if it's mild enough that I can just deal with it, or if it's something I should be having checked out.

Right now I'm dealing with a lot of other things (facial spasms, hearing degeneration, other medical issues) and I'm trying to move out of state, so it hasn't been at the top of my list, but I'm wondering if anyone has any advice or suggestions.

Thanks!

[lorigasper]

My balance isn't 100 percent, but it's probably 90 - and I think it's my new normal.  You're describing an awful lot of compensating.  I'd be tempted to have someone do an evaluation and see what they think.  I know there are things you can do at home - standing on one foot for 30-60 seconds, walking while moving your head, etc.  You may just have to take time to address what you're describing.  I just think I'd feel better if someone knowledgeable could at least get me started in the right direction and assess my progress….
Lori

[phantagrae]

Thanks!

That's kind of what I was thinking--as things progress, I feel like I need to be more pro-active about it.
I have felt, also, that part of how unsteady I feel has to do with knee and back issues I've had that are separate from the AN, especially my knees.  I've had some cartilage wear on my left knee for years now, and then in 2013, a few weeks before I saw the neurologist leading to my diagnosis, I fell hard and tore the meniscus in my right knee.  Since I was in the process for my AN, and I had very limited insurance, I just sucked it up and limped for 5 months, so it was hard to tell how much of my gait was AN balance issues and how much was bad knee issues.
Nowadays, I've also developed a bad sciatic nerve condition, so I'm all kind of jacked up, which doesn't help me be steady on my feet.

Fortunately, I had my torn meniscus repaired and I'm going to have an injection in my back to try to help alleviate some of the pain there.

I'm planning to move out to Arizona, hopefully by the end of August, and I'll have to get set up with a phalanx of doctors out there.  I'm glad the Barrow Institute is out there, if I have any further issues with my AN, but I may try to squeeze in a balance evaluation with my current ENT before I leave.

[Echo]

Hi Phantagrae,

I had GK treatment in Sept. 2013 and starting around November right through to the following May/June, I had both balance and ocular motor issues develop that were exactly as you are describing yours. I did the veering to one side when walking, touching the wall while walking down a hall, wobbly walking and found grocery shopping an absolute nightmare while looking at the shelves, scanning for items.  I took regular Vestibular Rehab classes for my first year post GK and found the exercises did help.  I also believe that a lot of my problems were due to the AN swelling post GK and as the swelling receded, so did my symptoms.  Vestibular Rehab might just help you out, it's certainly worth a try.

We do tend to learn how to accommodate our weaknesses, which isn't always a good thing. If you respond well to the vestibular rehab, it should help you move past some of the dependent behaviour you are developing - like touching the wall while walking down a corridor.  The best thing about this rehab is that once you are taught the exercises you can do them anywhere.

Cathie

[campbellmerlin]

I had and continue to have all of your symptoms. Turning too fast usually results in me crashing into the wall or furniture. I always have a bruise on my upper arm, knee or thigh. I don't think  I could ever stand on one foot as an exercise! I compensate a lot too. I figure it's better than the alternative - which would have been dying, if I hadn't discovered and treated the tumor