AVMs and running

Hello! I’m so glad this site exists - it’s so hard to find people who understand!

I was diagnosed with an AVM last month after, rather embarassingly, having a seizure in a restaurant. I’m going to go back there soon and reassure them that it had nothing to do with their cooking! I live in the UK, and I’m waiting for an appointment with a neurologist in September.

Anyhoo, I was wondering if anyone else here is a runner, and if having an AVM has affected your running in any way. I love running - I’ve done about five half marathons, one of them in a gorilla costume, and I run several times a week. I was planning to try for a full marathon in the near future too. I wasn’t given any specific advice about it in the hospital, so I’ve carried on since I’m feeling fine. I have, however, pulled out of a half marathon in September just to be on the safe side.

Is running with an AVM generally OK? Has treatment (embolisation, gamma knife, surgery) affected your ability to go out and pound the pavements? My parents are worried sick and my fiance isn’t too keen either, but I love it so much!

I know there’s another exercise-related topic (contact sports, if I remember rightly), but I wanted to ask about this specifically - and to introduce myself, and hopefully get to know some of you lovely people!

Hi Tempestas! I have been a runner, well more of a jogger/runner for a few years now. I found out about my AVM from a car accident a few years ago and my neurologist told me to continue what I’m doing but to not run a marathon! I generally only run for about a half hour or so and it does not seem to affect my AVM. He also told me to avoid going scubba diving or taking long airplane trips or even not to go on a rollar coaster, although I’ve been going on rollar coasters my whole life and never had a problem so I’m sure these are just precautionary measures! I wish you well and good luck! Email me if you’d like to talk!

Hi Tempestas,
I remember reading one of our members post here who was running when she had a bleed. I would say the rise of blood pressure and the pounding running causes would put stress on the avm, especially if you have had a recent bleed I would take it easy.

Okay, no half marathons for a while then. :wink:

Thank you both for your replies! The recommendation about flights makes sense - my bleed happened a few hours after a flight back from Scotland. It wasn’t a long flight, but it might have been the straw that broke the proverbial camel’s back.

I’m going to have a lot of questions for the neurologist when I see him!

Thanks again, and take care!

hi there :slight_smile: im a serious sport nut - i play 5 a side footie, tennis, gym, badminton, u name it. Lot of running and swimming. That has never stopped me in anyway physically altho my right side is a lot weeker. i would never give up my sport. No reasons why u cant be active IME. im possibly thinking of running an ironman context in the uk.

NEVER be embarrassed and know that you’re not alone. During this time how rude people are to handicapped people and the last thing you need to feel is shame. Society makes us morons, don’t fall into that. After going through something like this, you really learn to treasure the little things in life. Focus you r energies on getting better every day, not in pleasing other people, because only few of them truly understand what you are going through. Keep you head held up high, no matter what naysayers may say to you or think.

Awesome!!! That’s the spirit I’m taking about. This bastard AVM has no idea who it’s messing with. When did your AVM bleed? Once i can step on a football/soccer field again and run at least for 20 minutes, I’ll feel 100% again. I know that day is only around the corner!

Thanks Nando! Luckily my boyfriend and I were the only customers in the restaurant at the time so I didn’t have loads of people staring at me having a seizure. I don’t remember anything about it - we were just paying the bill, then I became aware that I was in an ambulance and there were two paramedics smiling at me. Very strange experience! Hopefully the lamotrigine will stop it happening again.

Your story is so inspirational - you’ve achieved so much against the odds! I hope you never feel embarassed or let people get you down - you’re truly remarkable!

Wow, that’s amazing! Just the thought of doing an ironman makes my legs turn to jelly! Do let me know if you go ahead with it - I’ll gladly sponsor you!

Thank you for your kind words. I do what I have to do to stay alive and see my little daughter grow. Nothing and no one will take that away from me. As to letting people get me down. I don’t ket them. Another AVM survivor here said how this life-threatening experience has made us grow weary of people. Well, If someone tries to get me down or say something stupid, they usually get a piece of me. Your boyfriend is very lucky to have your support during this difficult but temporary period in his life…

Hi there, very postivie approach :slight_smile: and “you really learn to treasure the little things in life.” - thats for sure, when u come close to meeting your maker, simple things can be quite a treasure sometimes.

Heres the iron man contest - http://www.ironmanuk.com/uk-ironman-703/home Whether i would really do it i dunno…just too busy with my tennis half the time.

My LTA ranking and tournoment listing - http://www2.lta.org.uk/Search/PlayerSearch/PlayerDetails.htm?Id=1-HJP-7262&EventId=1-E0UC4K&BSMGuid=19648318-f46a-46c6-baa3-c1d26757c053 all after my third strokes so im quite proud about that. :slight_smile:

WOW, Rich. You’re ranked and everything. Good job, mate! I’m glad you’re “one of us”! Even though they told me I would not be able to sit up on my own for at least sa year, picked up my racket about three months ago. I’m not the tennis nut I used t be, playing 8+ hours per day but I’ll get there eventually. I’m not saying I’ll be playing Wimbledon or the US Open any time soon, but I’ll like to start playing some tournaments again soon. If it was only my AVM, I probably wold have been closer to 100% today but it was really the acute respiratory distress syndrome or ARDS, which I contracted while in the ICU that really “screwed things up” and took me from this “cruel world” five separate times. My wife was told 5 different times, that I would not be here to see the light of day and best-case scenario, I’d need to carry around an oxygen tank for the rest of my life. Well, I’m still here and I don’t see an oxygen tank anywhere near our house. What the hell do they know, right? Keep up the good work and send us some pictures lifting some trophies! I told each and every one of my doctors that whoever doubted my abilities will receive my dirty socks and underwear in the mail, after my first football/soccer game!

I’ll have to come and visit you in the UK, Richard. In my 10+ years as a serious tennis player, I’ve never played on lawn. Only on clay and hard surfaces. I see that you’ve played in the AEGON Classic, which I think is on lawn, so that’s absolutely awesome!

Hi Tempestas. I got diagnosed with an AVM in June last year. The first signs were very minor seizures playing tennis. I am a keen tennis player and cycle to work. The minor seizures then developed into a full epileptic seizure during a game of tennis. I love my tennis and cycling and I can identify with your passion for running. The adrenalin and well-being from being fit and healthy is huge. I had my first bleed in May this year. Earlier I had been playing tennis. So aggresive aerobics may be a trigger in my case. I have made a decision to stop the tennis until I get my first feedback in October for CK treatment I had in April. I continue to cycle but a little easier these days. I want to be able to play tennis and cycle for a long time to come. I was lucky with the bleed and suffered no paralysis or stuff like that. I appreciate that my general fitness has helped my recovery to-date.



I would take it easier until your appointment. You have a lot of running yet to-do. Taking it a little easier until you know more might be the safest option.



I look forward to getting back on the tennis court and using some higher gears but first I need to beat this AVM.



Everyone of us is different. This is my experience and advice for what it is worth.



Take care,



Seán

Heh, I called him my boyfriend, but he’s actually been my fiance since last Sunday! I’m so lucky to have him here - he’s so wonderful!

Your little girl is lucky to have such a loving father, too! :slight_smile:

Thanks for your reply, Seán! It’s so frustrating, isn’t it? Sounds like you’re taking a sensible approach.

I guess because I’m 25 and have always been fit and healthy, I’m finding it a little hard to believe there’s anything wrong with me - let alone anything potentially serious. I don’t remember anything about the seizure, and the aphasia always passes after a little while. It’s strange what you can get used to!

I also dance regularly (modern jive and just started street too) - taking it easy doesn’t really come naturally!

Hi Tempestas! Just recently diagnosed with a CVM in my left cerebellum. Developed severe vertigo after a 20 mile run and an evening swim July 7th, 2011. I had a bleed. Vertigo has resolved except for minor balance problem when I get tired. I was training for my 3rd marathon…My neurosurgeon advised me not to engage in strenous activity…I have not ran since. I do spinning, swimming, and weight training with the machines instead. I do miss running and just zoning out in a long run…I did have the burning pain at the back of my neck in my last mile…In retrospect, I wonder if my nape pains or headaches after a long training day were signs of microhemorrhages of my CVM.
Right now, I am okay taking it easy as not to rebleed again. Eventually, I will want to have the surgery and be back again to running…I am in withdrawal from running. Good Luck!

Hello Nando, well keep up with some tennis if u can! Or doubles, thats the best to start with as u just dont run around that much lol yes if u ever visit the uk of course i would have to give u a game.

As reading thro some others as well, i suppose one thing u have to consider is just not too over do it when u decide to come back to sport. When i had my last bleed i truly was in peek fitness - but 14 days in intense care wiped that totally. Took me around 4-5months and let the summer run a bit before i came back to 5 a side football and then 11 a side.

Thank you, Richard. I’ll keep that in mind. I went down the stairs and for a 100-200 meters walk the other day, on my own, and I felt really tired afterwards, so you are 110% correct. I was in a hospital for 7 months. 6 weeks in the UCI and lost close to 40 lbs., so time is definitely important for m body to recover. I do miss, however, the smell of new tennis balls in a court and the smell of grass on a football pitch too much, though. I’ll get back to it and better than ever, for sure! Thank you for your input!

Gosh, that must have been awful. I’m really glad to hear you’ve been able to get back into footie!

Makes me realise how lucky I was that my bleed didn’t do any lasting damage.