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AVM Survivors Network

Spinal AVM with anaueysms and exercise


#1

Hi all, I have a cervical spine avm with several small anaueysms. I was diagnosed in December 2015. The Avm has changed my outlook on life and initiated a total shift in my career after a suspected bleed in November 2016 where i had to take a stepback from frontlune nursing. The avm is unopereable so i have had to look at all aspects of my life to see what i can do for myself to help. My symptoms are very much a mixture of whats there all the time, the fluctuating and the suprising “not had that before” ones ! My health has suffered as i have put on lots of weight now i have s desk job and also lots of comfort eating as i feel a bid down. I have recently picked myself up and started some aquaarobics on advice from my doctors and consultants. I am feeling more positive despite the uncertainty of my avm. I would like to know about how much exercise people do ? I am thinking of adding another exersise class to increase my fitness and hopefuly loss some weight. I believe myself that any exercise must be good for me, what do others think ? :thinking:


#2

That’s a tough question Mandaayr, and one with a lot of different answers but only one for each of us, if that makes sense! I think it is so individual in many cases, and certainly upping the intensity level of training needs to be supported by our medical folks. First and most important thing is that no amount of exercise makes up for a poor diet. I eat very selectively 6 days a week and have my cheat day on Friday. I focus on fruits, vegetables and lean proteins ad limit my carb in take. It has worked for me, but that too is individual. I’m fortunate to be cleared and able to do a fair bit of exercise with no effects, except I now need to do it early in the day of I don’t have the energy later. Take Care, JOhn


#3

Hi Mandayar, sorry you were feeling down. With all that’s happening it sounds completely understandable! Besides specific exercises to strengthen core and build muscles, my physical therapist recommended light walking, yoga and stationary bicycle. I bought a huge stationary bike but it took up so much space and to tell the truth I never used it. I’m thinking about getting the type that’s just wheels. Yoga class was hard bc of balance issues so I tried to get to class early and stand next to wall. I told the instructor I was having issues and just did as much as I could. Also sometimes I do beginner yoga videos at home on youtube. I also have 5 lb. weights and sometimes when I was feeling down I would just do easy exercises with those and it made me feel better. Having healthy snacks like fruit or nuts is always good but sometimes its good to splurge too! I wish you all the best.


#4

Sorry for the delay in reply John and Gumlan. Thank you for your replies. I am just finding it hard to not be able to do. I have started to see a counsellor and it’s trying to accept that what I used to do may not be possible and if I am being honest and not too tough with myself it’s not that I am lazy just very fatigued at times. My symptoms dictate my exercise unfortunately but I have been more determined now to get my healthy diet into shape with some occasional treats :grin: I am going to stick to my two classes and try and add in some more gradually. Amanda


#5

Hi, it’s is so individual because everyone’s symptoms are different. I have found the more active I am the better I feel. My avm was low in my s1 so poor proprioception. I struggle with balance and constant burning/tingling. I go to the gym 4 days a week and do exercises from physio daily. Exercises help a lot both physically and mentally.