Can anyone give me information regarding exercising and AVM's. My youngest daughter has two AVM's and she has recently starting going on the treadmill, both fast walking and running for approx 30mins 4 times weekly. Is this safe or could she be putting herself at risk of her AVM's rupturing.
If her avms are in her brain… She is taking a big risk. She is taking a chance of rupturing it., Of having a stroke. She is playing with fire! Didn’t her doctor explain to her that she can’t exercise or do anything that raises her pulse and her blood pressure? The only thing she can do safely, is walk. The brain avms are nothing to mess with. These things can bleed on there own! They don’t need any extra help. Sorry to be so blunt. But, these thing are very dangerouse.
I agree with Ben. I would add that she should avoid any stress situation - particularly lifting anything heavy or anything that causes a strain.
Sue, I really think she needs to ask her DR. Your note said she "recently started". If she had been a regular runner before, then laid off it, and now is restarting it, it might not pose much risk. If she's been a couch potato and then started, that might be different.
A DR familiar with her health and her AVM might offer a better opinion. My guess is AVMer's here run the spectrum from real jocks to those that think walking from the couch to the frig is a workout. Extreme straining is not good though.
I was told by my dr’s not to use the treadmill! i didnt really push as to why but I figured if they say no its to be taken at their word. I dont want to “make my avm mad” so I dont so much excering. I would call her dr and ask what they think just in case! I just walk outside because I can go at my own pace and take my time. Take care ~Andrea~
Sue, Once again, Ron, seems to be the voice of the reason! Every avm is different and only ur DR. knows what is best. When I was diagnosed in my early teens, the only thing I had to give up was football.(american) Understandable because of the collisions…I continued to remain active in other sports and have always exercised in some way for the past 24yrs since my diagnosis. Best advice, ask ur DR…nobody here is a physician, and it is frustrating to see such alarming posts! just my opinion. -GK
I used to love the gym… But I was diagnose with left temporal lobe avm…my neurologist advised my not to lifted heavy weights no running either… He advised not to let my blood pressure increase.
That can cause another bleeding…that is my case like they said we all not the same but please talk to her doctor. Thank you for sharing your concerns with us.
You really have to trust the doctors with these types of questions, and write down exactly what they tell you. Every AVM and every person's situation is unique. I find my doctors are perfectly happy to get back to me if I call the office. I leave the message with their staff, and they'll call me back with either an answer or the doc calls to discuss. It may not be true for all doctors, but many are happy to provide you with answers and don't want to make you wait for appointments. We forget thy are generally nice people and want to work with us. So, please call your doctor's office and let the doctor give the okay on it. It's likely safe to do moderate exercise and to build up the activity, but only the doc can give the right answer.
Thankyou for all your answers,, I have tried to discuss exercise with Ashleigh, but young teens can be subborn, she is like these things are not going to rule my life.. I have left a message for our Dr and am awaiting his call.
Ash has not been to good this week, feels generally ill, severe headaches, might just be a cold, but I worry constantly that something will happen, she has two AVM's in different areas of her brain so twice the chance of rupture.
I think its very important to understand everyone's perspective with AVMs. Without question, always be guided by a Neurologist. It's their job and they know the specific case. Groups like this, by definition, offer advice from personal experience. Our expertise only relates to our own particular case and experiences, but the fact is in the quest for understanding we all like to know what others with the same condition have experienced.
In 'My Story' blog I stress to treat all internet info with care, but my experience is that doctors don't always tell you everything. When I was first diagnosed all I was told was to not do any heavy lifting. It was only when I looked into it myself and went back with further questions, that I was then given a more comprehensive list of 'don'ts'- it was assumed I would know, but as we know at the start we don't know. My list then became; no strenuous sex, take it easy on the toilet, no exercise except swimming or walking, don't lift anything heavier than a normal suitcase, no theme park rides, etc.
I have lived and studied this for a long time and there is a difference between risk of a bleed and symptoms you may get. Don't quote me exactly but over a life time there is something like an 80% chance that an AVM will bleed, and this isn't connected to whether you get symptoms or not. As I understand it gentle exercise is ok, but anything that is a strain (any activity that makes you red in the face) is bad.
We are merely AVM sufferers - not Neurologists, and you should never take conventional wisdom over medical advice, but conventional wisdom is what this group gives you.
when my avm was found i was 4 months pregnant with my daughter… i was not allowed natural birth or any symptons of labor, straight into planned caser - as the pressure of pushing, increased blood flow and adrenaline could have caused my AVM to bleed a second time. i am thinking increasing blood pressure, blood flow, adrenaline also happen during exercise. i would definately ask the doctor about this.
i am also the same, sue. my AVM is still active and has bled once, it is being removed in 11 days following embolisation, but in the meantime i am very tired, feeling unwell, unrested, lethargic and i get seriously bad headaches that are migrainous in nature, also fuzzy vision. i try to take it easy but i am running around after a near 2 yo and a 4month old. i have been feeling like this since i birthed my baby - and no colds! its something to take seriously these side effects i think…
sue Bilson said:
Ash has not been to good this week, feels generally ill, severe headaches, might just be a cold,
We are not getting much support from Ashleighs consultant, they have basically said the perital lobe AVM is small but very near the motor strip, they cannot embolise or remove, but she could have gamma knife, the posterior fossa AVM the can embolise, but they also think maybe just leave them and see how they go, treat them if she has a bleed.
This so confuses me as they also say there is an 85% chance that in her lifetime either of them could bleed, this means she has two ticking timebombs in her head.
I do hope ur operation goes well, keep us informed
When my son was a teenager, we were told that while it would be nice if all he wanted to do was sit at a computer or TV, but it might not be mentally healthy for him. He was told to avoid strenuous lifting, contact sports, but he ran track for all 4 years of high school without any incident. He loved wrestling, but could not do that because it did cause headaches–due to the strain in wrestling. She needs to check with her doctor about her particular case.
sir good day... can i ask you something, i have also a avm on my brain, im gonna ask you if i can still do workouts, because im doing gym before, and when i discover that i have this, i stop, but im continuing my workout here at home, but im only doing bodyweight training, do i need to stop it also? even if i can still do it? there's nothing i feel pain, thankyou sir
I've had Gamma Knife 4 times for a large AVM in my right parietal lobe. I've also had a craniotomy to clip 2 aneurysms.
My neurosurgeon told me I can't SCUBA until the AVM is obliterated, but that I can dance all I want. I was in the studio 2-3 times a week and a member of a Middle Eastern dance troupe before the AVM was found. I was back in the studio 4 weeks after surgery and 3 days after my most recent GK.
Every person is different, so check with what her doctors say is ok for her.
When I was in my teens I used to represent my high school/secondary school in Athletics and Rugby. I also spent a few years working out hard in the gym (weights+cardio) for at least an hour a day.
Only once I almost suffered a blackout when I had pushed myself as hard as I could for a few 100m sprints with very short recovery time - luckily a teacher realised I was suffering a lack of oxygen to the brain which appeared to resolve when he told me to lie down and he raised my legs. I went to my doctor who put this down to low blood pressure as I am fortunate enough to have quite low normal blood pressure.
Fast forward 15 years to last year and I suffered 1 or 2 spontaneous intracerebral haemorrages while I was just sat down doing things I love.
My neurosurgeon has agreed this is concerning and it is most advisable for me to avoid any activities that could increase my blood pressure - e.g exercise or even stressful situations.
I don't even bother trying anything strenuous anyway as since that bleed last year, even if I run 100m to catch a bus I can feel my AVM throbbing so I'm trying to do as little as possible until I have my craniotomy later this year.
I have had my AVM removed, but I was back in the Gym around 4 months later (with the permission of my surgeon and GP)
I am allowed to do all aerobic exercises, running, cross trainer, rowing, treadmill etc as long as my heart rate doesn't exceed 115BPM.
I can do weights on machines, but I am not allowed to do free weights or machine weights that I need to raise above my head. Extreme straining is a no no.
I go at least 3 time per week and have done for the last 2 years, with no side effects other than losing a bit of weight and adding a bit of muscle tone.
In the first instance Suzy, I would get you Daughter to have a word with the Doctors involved with her AVM and get their opinion.
Hi. Earlier this year (March) I had a Stroke Mimic. According to the hospitals this was some kind of neurological event which gave me the same symptoms as a stroke. But I didn’t have an actual stroke because my scans would have showed it. Nevertheless I had left-sided weakness, couldn’t walk, a droopy mouth and bad speech. Fortunately I have recovered really well. However the doctors can’t explain what really happened to me.
I am 43 and have an active AVM in my Cerebellum. I have always suspected the stroke mimic had something to do with my AVM and for the last couple of years I had been doing some intensive aerobics 2 or 3 times a week. Since my stroke mimic I have laid off the exercise as ‘it doesn’t feel right’. Reading this string I feel my body might be trying to tell me something!
My doctor told me NO exercise at all while I still have an AVM. The most he said I could do is walk or a brisk walk. It is a risk because the AVM could rupture from your blood pressure going up, etc.