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AVM Survivors Network

Exercise


#1

I am now six months post craniotomy for an AVM resection. I’m able to walk around, but my avm was on the cerebellum so my balance is not great. Does anyone have any good ideas for exercise that will get my heart rate up a little, but would be safe for my balance issues
Thanks


#2

Totally different thing - but when my dad was fighting cancer and wanted to get exercise but felt he was too unsteady to walk outside, he and my mom would go to the local grocery store (a fairly large one). He would get one of the smaller carts and put one or two things in it and proceed to “wander” around the store getting his exercise. To everyone else, it looked like he was picking up a few things at Meijers. To him, he was disguising his walker as a shopping cart and doing it where the weather was always 70 with 0% chance of rain (at lease once he got inside). I’d be lying if I said I haven’t done that myself a few times on this journey already too… Tom


#3

And I thought I was the only clever one doing that [sigh!]. :rofl:


#4

Brent - if it’s you and my Dad, you’re in good company. And actually you’re alone again as he’s taking his walks in heaven and no longer struggling as God called him home on March 23 of this year.


#5

Hey Cancrd,
Although not exactly the same, there is a condition known as Cerebellar Ataxia (CA) which affects balance very similarly to your situation. As part of the Ben’s Friends Network there is a page which deals specifically with ataxia of all types, including CA https://www.livingwithataxia.org/
Some members there speak of appropriate exercises they have found to be of assistance to them and their families, might be worth having a look at for some ideas. Personally I have found it a helpful resource of ideas.

Merl from the Moderator Support Team


#6

My AVM was on the cerebellum and the embolization knocked out my balance too.

The good news is that it did get better, even two years or more out, just way more slowly.

The best exercise I found was water-based. First with in-patient therapy, then a few months later at the Y in a gentle/arthritis class, then the regular water aerobics. Water slowed down the tipping so that I had a chance to correct it. Also, the full-body resistance moving through the water was very helpful. On top of that, I was keeping my head upright all the time which was extremely helpful on the nausea front. I couldn’t do even a lot of things in the land-based chair exercise class because of that, although it was very helpful too. By the way, there are videos for chair yoga and so on and there may be a good one for you on a service you subscribe to already.

I have friends who do water walking, basically just walking or “jogging” laps in a shallow enough pool. My Y has a lane where you can do this.

Other members of my family are rowers and we had an erg (a Concept II, the kind rowers use) at the house, and I could do that safely before I could walk without a pole. They have those at my gym also. These are not the same thing as the “rowing machine” on the weight circuit, by the way. If something like that works it is fantastic exercise and includes the kind of resistance that helps keep bone mass. But some people find it way too boring. Seated bikes at the gym were helpful but I felt my upper body wasn’t getting anything from that.

Another thing to try is a telescoping walking/hiking stick, the kind that looks like a ski pole. You can see what I mean at e.g. the REI website. I “graduated” myself from the six-foot closet rod the therapists insisted I use instead of a walker, and used one of those instead, adjusted for my height. At first everywhere, later just on uneven surfaces. If you use one be sure to get the plastic “indoor/pavement” tips on them so you don’t tear up your floor. I used that hiking pole for months, even when I was walking laps through IKEA for exercise when the weather was bad.

I still use my husband’s arm a lot, especially in crowds. I rely on my vision way more than I used to, so it helps to have fixed points that aren’t moving. But I am definitely in the normal range of balance now, just not where I used to be.


#7

My daughter’s AVM was in her cerebellum and since her rupture 20 months ago she’s been slowly regaining her balance. Like the person who responded above, I feel more than anything the pool has helped. Just walking forwards, backwards, sideways and going up and down the pool stairs has helped her balance very much and the muscle strengthening has helped her hold herself more steadily. She also using the nordic walking poles.


#8

Thanks for the help everyone. I had no idea that there was an ataxia site.
I’ve been in the pool already and think that has been the best thing so far. I’m going to try walking in The water and swim a little faster, that should get the heart rate increase I’m looking for.
Also, I did get some Nordic poles for when I’m out in a busy area. The looking around to make sure I don’t hit anyone or fall makes me dizzy and I need the support. I’m thinking I’ll try them when I’m walking in my quiet neighborhood. I’m walking ok, but can’t walk faster because of my balance. These might just do the trick


#9

Elisabeth Thanks for all the great advice. I’m especially grateful to hear that you experienced improvement for so long. That really gives me hope
Carol


#10

Just to add to the good discussion, after my ICU discharge post cellibellar craniotomy, my balance is impaired as well. Now after 10 years, I can testify that excercise makes a world of difference. Improvement comes slow and steady. Now, as before, I venture out walking even in snowy winter, treading gingerly, knowing that heavily clad me would be well padded even with a fall. Walking up and down the stairs is another good exercise, provided you hold on the side rail at all times. Let’s keep on exercising and see the fruit of our improvement!


#11

Hello there! I am celebrating the 25th Anniversary of my cerebellar craniotomy in three days. Oh, how I remember how wide-based my gait was! And, how I had to hang on to someone’s arm to walk, especially uneven surfaces. Exercise is very important in progressing, and all the suggestions above are fantastic. I have used most of them. Water provides gentle resistance and a safe surface to fall! I still use the shopping cart to steady myself in the store, since all the items, aisles, and people make me feel sensory overloaded.
I searched for an activity at the Park and Rec department that might assist me in developing more strength, stamina, and co-ordination. I found hula (not to be confused with Tahitian!), and I have been dancing ever since! I was quite stiff and uncoordinated at first. I had trouble remembering the sequence of verses, the steps, and hand motions. And, frankly, I still do, but so do the others! When certain motions make me feel dizzy, I modify the movements or step out of line for a break. Bonuses: I have learned much about Hawaiian culture and developed an appreciation for Hawaiian music. My hula sisters and I are supportive of one another, too. I never want to give it up! So…just an idea. Maybe you will find something for which I and the others may benefit. Whatever you do, go slow, set realistic expectations, and enjoy! :hibiscus:*


#12

I had a doctor tell me once to do ten minutes of exercise. Ten minutes??? Well anyways I tried it. Didn’t work for me. I went to sleep.


#13

I had a freak stroke 16 years ago, and lost about 10% of my cerebellum. I have done very well since, but my case may be very different. I didn’t lose the vertigo till about 1.5 years later, but by then I was back to things (like mountaineering, skiing and running) not normally associated with cerebellar damage.

There are some exercises that can really work out the legs, even when one has limited balance. If you have a horizontal bar you can grasp, you can do partial squats and get an amazing amount of thigh exercise in just a few minutes. I could use the railing at the top of my staircase. You can also hold a sturdy horizontal support, such as a tree. After my initial post-stroke PT, I was able to use the PT room at the hospital for a minimal charge, where they had stuff like parallel bars to hold. Some treadmills have good side rails to hold, and you can use a high ramp % to get a lot of exercise. We used to have a fairly inexpensive reclining exercise bike; you could use it when watching TV (my soft-hearted wife gave it to a friend with MS).


#14

Thanks so much for the help. I am doing a fair amount of strength trading, although pretty slowly since straining give me head aches. Since my balance is still an issue I can’t move very quickly, but I am walking a few miles now. I’m looking to get my heart rate up a bit so I’ll try the treadmill on an incline and the stationary bike
Btw thanks so much for mentioning how long it took for the vertigo to go away. That is driving me crazy and I was beginning to wonder if it might stop at some point. You make me hopeful :sunglasses:


#15

I guess they’re called recumbent stationary bikes https://www.walmart.com/ip/Marcy-Recumbent-Exercise-Bike-ME-709/11820039?wmlspartner=wlpa&selectedSellerId=0&adid=22222222227000116458&wl0=&wl1=g&wl2=t&wl3=40331797352&wl4=pla-78293990312&wl5=9030819&wl6=&wl7=&wl8=&wl9=pla&wl10=8175035&wl11=online&wl12=11820039&wl13=&veh=sem&gclid=CjwKCAjwlejcBRAdEiwAAbj6KXtOm_hwtYTZVz2eWALrdXcdytwTmgxaDFBoEmyI2isZ9HE1VPKESBoCZGoQAvD_BwE


#16

Ok. We have one at the local gym


#17

Another good machine is an Arc Trainer, it is low impact, can be adjusted in a lot of ways and incorporates the upper body. It is a form of elliptical. So it addition to the cardio component and the upper body work it also provides support for balance/position. I am fortunate and do a fair bit of running but started using one in the gym to avoid some of the pounding that running does to the body. I really like it, great work out and know it would suit well if balance was challenging. Certainly may be worth a try, the one I really like is made by Matrix. Take Care, John.