Exercise/Running with a Brain AVM that has never bled

Just looking for advice as to whether it is safe to take up running/exercise after a long time being a couch potatoe! I have a brain AVM of 4 x 4 which has never bled, but did suffer some seizures last year. I am 49 years old!

Sandra

Hi Sandra,my son Stefan,also have a Brain AVM,un-operatable,un-treatable,he`s 19 years old,4cm in the left pariental side...He had to stop his cycling and so on,but we went to Prof.Le Fevreu(on the board for brain avm`s) in Cape Town and he gave him the green light to excersize,but no heavy stuff,and excersises where you can bump your head or let your blood preasure rise. Most of the equipment in the gyms have monitors to monitor your heartbeart and blood-preasure....Its working for him,although he also still get convultions....He was diagnosed in 2012 and had 2. Hope you will be up and on the excersize soon. Kind regards.Debbie

Hi Sandra
To keep my message brief. I have found that certain types of exercise brings on the symptoms of a seizure, in my case it starts with a visual aura which can then develop into a full seizure. This has happened twice during strenuous activity at the gym. Luckily I didn’t actually convulse due to the meds I am on.
From my experiences the exercises that brings on my auras are running and strenuous weight training (even on the resistance machines). I think typically it is just very strenuous activity that I suffer with. Although I am a keen cyclist and can cycle up very steep hills with me puffing and panting and I am fine, I think things like running are more intense over a shorter period and obviously lifting weights is very intense.
I still go to the gym 2-3 times a week but just know my limits and tend to try and not over do it, obviously push yourself abit else its abit pointless but I tend to not properly go for it.

I hope this helps you and gives you abit of confidence to give the gym a go. Take care and enjoy yourself.

Jamie
(Post-Op 2 years after Craniotomy)

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Totaly agree with what you said Jamie....

I think you should discuss with your doctor about what exercise would be OK for someone with a known AVM, and decide based on that and your own feelings.

That being said, since I was diagnosed with my (small) AVM which has never bled and causes nothing (so far) except pain and numbness on my left side, 3 years ago, I have continued to run long distance (which I've done most of my life - now aged 46).

When I was diagnosed, I decided to do my best to stay healthy, which included changing my diet to a low-carbohydrate diet and committing to regular exercise, since you never really know when you will no longer be able to do those things, and to me there is nothing better than running in the woods :)

I've run 6 marathons and some even longer trail races with my AVM. There are some studies apparently that show AVM rupture is not associated with exercise. But you should ask your doctor about what it is you want to do, and decide with him or her what makes sense for you as an individual. For me, exercise would be too important to give up just because I now know I have an AVM - after all, if I understand correctly, I've had this AVM since I was born, and somehow I've survived to 46 even with very strenuous exercise, and even though the AVM was only found 3 years ago.

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I'd say if your doctor clears you for exercise then do it! Being healthy will only help you if you need to have surgery. I've had 4 surgeries to remove 5 different malformations that bled, and I have quite a few more in my brain and brain stem. Being fit helped a lot with recoveries. I run and strength train 5 days a week and do several half marathons each year. The neurosurgeons at Barrows told me there is no evidence that physical exertion or even trauma (car accident, being punched, etc) will do anything to affect a brain bleed. Basically if it's going to happen it's going to happen so live your life is what I was told.

Livi

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This is chain is very personal as i'm a little over 6 years post-op. I did notice about 3 years ago, a tendency to feel an aura, tingling on the right side and sometimes weakness as well after intense exercise or prolonged yard work. The doctors have found no connection between the exercise and the presence of the scar tissue, but also don't know why it happens only when I exercise intensely. I've stopped running or doing weights, just walk now, till I get a full understanding of why this happens.

Talk to you doctor and let them guide you. I was exercising and quite active prior to the discovery and surgery.

This is a good question for your doctor since everyone’s AVM situation is different.

I’ve been doing CrossFit for 3 years. (My AVM hemorrhaged 13 years ago and was treated, but still there.)
My doc said avoid power lifts and large increases in blood pressure potentially with upside down things or severe type weights. Aerobic is generally fine. I’ve always ran, but never done anything more than 8 miles or so. Once heard to stay away from marathon or even half marathons.

I think what others have said here makes sense. Its probably a very individual thing. My AVM is unruptured and I do an exercise regime twice a week. I have never really thought about the effect on my AVM. But I will ask my consultant about this when I next see him now. Thanks for bringing the subject up.

From what my neurosurgeon has explained to me, NOTHING you do will cause it to bleed. Considering what I've done almost my entire life, I find that to be true. In fact, I find exercise helps. I would consult with your doc since everyone is different, but I think the fact that you know it's there, is the only issue. Good Luck!

was being monitored and on the last mri in fall of 2012 , the docotor said there had been no change and I could resume normal activities, which I explained as being somerunnibg to ref basketball and working out in thegym. H esaid ok. Mine statrted leaking during a workout and had to be surgically removed the leakagecaised a stroke leaving me para lyzed on my left sidw.
I think you should have a frank discussion with your dpcto to ensure he/she understands what you are doing . I was58 when mine leaked

From reading stories on the site, I have seen certain patterns in people's circumstances during a rupture, most of which involve elevated blood pressure. Strenuous workouts, alcohol or drug bingeing, sexual activity, lifting heavy loads, and sleeping (where apparently, there may be a blood pressure spike at different times during the sleep cycle) have brought on ruptures for some of our members.

That being said, we have members who work out, run, and even do Iron Man and triathlons. Keep communicating with your doctor, wear a medical alert bracelet or necklace, and pay attention to any messages your body or brain give you telling you to slow down.

I think you will find that it depends where the AVM is - for example in my daughter's case exercise would actually lower blood pressure on that side of the brain and so we were advised that it would not be an issue at all. Suggest you check with your doctor to be on the safe side.Overall I agree with the comments that there is no statistical evidence showing exercise, or indeed any day to day activity, increasing risk to an AVM.

My husband and I have walked a couple miles per day 3-4 times per week. We didn’t know he had an AVM. One day, life was so busy, and he didn’t want to miss our exercise - and he said let’s run in place in the bedroom. We ran, and ran - right there in the bedroom. I tired and stopped and he kept going. The following day his AVM ruptured. I have wondered if it lifted his blood pressure too high and caused the rupture. I don’t know - but I do know that you should consult with your physician. I have read on this site folks with unoperable AVM’s that have implied they needed to watch their blood pressure. My husband was extremely healthy, drank carrot juice, etc. And like I said, walked a lot. I just wondered if maybe the quick increase in blood pressure didn’t do it.

Thank you all for your advice, I really appreciate it. I will I think get in touch with my consultant and get his advice before I get the trainers on!

Hi Sandra,
I am 61 and my AVM was the size of yours or a little larger. I was afraid to exert myself because of the pressure on the veins and arteries. I opted to ere on the side of caution. However, my embolization and surgery came very quickly after diagnosis, so I didn't have much time to think about physical activity. I do not presume to know about such medical things, so I would talk to the doctor. My experience was that they are happy to advise.

My AVM bled during a martial arts class where we were very active -- I was 15 yrs-old at the time. I had another bleed while vigourously roller skating -- I was 17 yrs-old at the time, I am currently 47 yrs-old and had a bleed 2 yrs ago. My neurologist ordered an angiogram which showed 2 new avm's, one of which was treatable with embolization and I've been fine since then;however, though I walk daily I have not resumed strenuous exercise. As stated by many of the members here, I suggest talking to your neurologist/surgeon before starting an exercise regime.

Take it slow, I started two months ago to walk on my treadmill, so I felt so good that I decided to do INSANITY, huge mistake I ended up in the ER with a severe headache, I just had an angiogram last week and the Dr. toldd me to stop with the exercise.Good luck.

Hi Sandra,

Good to hear that your actually keen to do some exercise. I am from singapore and my name is Ethan. Nice to know that your doing well. Just a short intro to you that i actually did alot of vigorous exercises such as representing school for basketball competitions during my teenage years, participant in strenous canoepolo sport, as well as completing a Full Marathon without consulting the doctor beforehand which really got worse as years gone by. Just want to let you know exercise in an control environment like the gym with a personal trainer is absolutely fine, but you must consult your doctor first whether the AVM position grows at which oart of the brain. I find its important because if it grows near your motor area and bled during your exercise the episode might not be good.

Just to share that i actually went a 21km run and collapse while have a grand mal seizure during 2011, and luckily there was no bleeding. After a year of researching and found a suitable consultant to remove my AVM which grows on my left upper lobe of the brain. I have survived and currently able to wield my right hand and legs quite well. I want to thank God for this success.

Mile exercise definitely will help but not vigorous, be sure to always have someone you trust with you while yr working at the gym. Some exercises can be done at home as you can have the comfort of doing them at home will be good. Have a schedule to set targets that you wish to achieve, plan a routine to slowly improve and meet your target, after which you can progress to a higher level at ease.

For us that has AVM, i notice we can't adjust to immediate changes but with practice routine, we may even achieve better results like a normal individual.

In short, slow and steady wins the race. God Bless You with Patience, knowledge and sensitivity to know your Body well.