Brain AVM in pandemic

I have been diagnosed with brain AVM for a good 4-5 months now. I have been advised to not go for gamma knife surgery because of risk of getting infected by coronavirus. I am on antiseizure medicines. I feel completely fit.

What are my chances of stroke in this condition.Do i have a risk of getting a stroke or seizure if i do moderate to high exercise because my neurologist advised me just to not do strenuous exercise?

Well I would listen to the doctors. I think you might be able to still exercise some but just do things like riding a bike or jogging just don’t push it over the top like running a mile in 6 minutes.

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I agree with John, listen to your Dr. for sure. When I was released from hospital post bleed I was allowed to walk, nothing more. As time passed I was allowed more and more until I was permitted to do anything I wanted. It was based on what the Dr. said and I didn’t push it until he gave the go ahead. Take Care, John.

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I MUST agree with both John_O and JD “listen to the doctors”.
That feeling of ‘completely fit’ is not unusual, the AVM has developed over time, slowly, but if you stroke, it’s more likely to be sudden especially if you push the exercise.
DON"T DO IT
We are not Dr’s, we have not read your reports nor seen your images, so any estimations of effect is impossible. There are just too many variables ie location, type, size etc, even the medicos have issues in giving an exact outcomes of ‘What if’s…?’
BUT if your “neurologist advised me just to not do strenuous exercise?”
DON"T DO IT
I say this because I didn’t listen (or thought I’d be OK). I pushed myself too hard too soon, doing myself more harm than good. I was telling myself I was building stamina but ended up back in hospital requiring further surgery. If there ever was a chance of a full recovery, I certainly screwed that up as I’ve now been told I’ll NEVER be able to return to my former profession. My advice:
DON"T DO IT

Merl from the Moderator Support Team

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I have an AVM, but I have not had a stroke or an aneurysm. I have had 3 seizures in the last three years and 2 of them have come while working out when I was reaching a peak level of conditioning. I can only advise you to follow your doctor’s advise and take it slow.

If you get stroke life may be over at that point who cares about virus. Even GK takes 2-3 years. I’ve seen members don’t do embolization and then have hemorrhage. I highly advise do embolization buy a 3M mask from EBay I even wore it during surgery. You can protect from the virus and also protect your brain from causing sudden death. Don’t chose between one or the other. Both can kill you. But brain has much much more risk of killing you it’s already inside your head and it will pop. Trust me.

I have seen a lot of members have a stroke a year after diagnosis. Don’t believe in the trials ppl die or lose brain function/vision. Don’t take this disease like a season it will kill you if you wait. Don’t think you have time to see what you’ll do a year from now. Maybe the statistical risk is not as high but you were not supposed to have AVM in the first place. You should be in surgery within two weeks to prevent burst. Time is not your friend here, maybe maybe not, who knows. But doing GK is not the first line of defense unless your AVM is like 2-3mm or less and really really close to the surface.

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Let’s not panic a likely already anxious new avmsurvivor. We were all born with our avms and lived a number of years before being diagnosed. Some dxs come from ruptures while others are diagnosed with other symptoms like seizures. You are still in the information gathering phase, Radhika. Please listen to your Doctors and find a reputable neurosurgeon. Neurologists can help control your symptoms, i.e. seizures, but a neurosurgeon is the one that make a plan for treatment. You have had this avm for 21 years now. Find the best team of neurosurgeons for treatment. All the best, GK.

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Hi there-
I too was recently diagnosed with AVM which bleed in February of this year. My neurosurgeon didn’t place any restrictions on me other than very heavy lifting where I feel like I’m straining. But everyone is different and I’ve read different people on this site getting different restrictions from their doctor. I would follow your doctors advice. And it may be beneficial to get a second or third opinion.

I know it’s stressful during coronavirus. I had to undergo diagnostic testing at a time when coronavirus was very high here (I’m in Connecticut). Just try to focus on what you can control and try not to worry about what you can’t. Information is power, so perhaps a second or third opinion may help.

I went to NYC a couple of weeks ago (Aug 2020) and underwent gamma knife surgery. If you are in a coronavirus hot spot Another option may Be to travel to a lower infected area. Coronavirus may be around for a while.

Best of luck in your journey. I agree with the another poster. Find a good neurosurgeon and focus on what you can control.

Thank you all so much! Sorry for not replying early. In a interesting turn of events, I had a digital subtraction angiography done few days back to decide the best line of treatment and my neurosurgeon said that my AVM was at a very very low risk of rupture but i had few small aneurysms in the vessel. Thus i am advised combination of embolization surgery followed by Radiosurgery. I am yet to get a second opinion but either way I am told to continue my medicine ( levera 500mg twice a day) lifelong. I will have to wait for the first procedure since i have my college exams very soon. What do you all think about the advise of surgery given? Do you all have to continue your medication lifelong?Also are aneurysms common in this condition?

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Only meds life long for me, so far are for blood pressure

I’ve done my fair share of learning about AVM’s & the like - aneurysms don’t seem to be too common with these(seems to be mostly hemorrhages), but I don’t see why it wouldn’t be possible

Best advice I can give about any of this is, put yourself into best hands possible. I learned this from this board, it’s just outside the realm of regular folk knowledge. I read the notes on my embolization procedure & it made sense on paper - but, I have no true clue on how it was actually accomplished.

As far as how soon should you get this done - well, I never got to know that I had one until it ruptured. And, from this I consider myself lucky - It’s life changing stuff, and that’s putting it lightly

Radhika,

We can’t give you medical advice but what you’ve been told seems entirely sound to me.

There does seem to be some connection between having an AVM untreated and it leading on to aneurysms sometimes. I’m quite sure I’ve read recently of more than one person being advised that their aneurysm was driven by the AVM.

Very best wishes,

Richard

H Radhika,
I was also diagnosed during the Corona virus lockdown here in London. It was incredibly difficult having no visitors allowed as well as being around nobody that cared BUT now I’m at home, I’m slowly getting back to a workout regime: I used to exercise at home doing HIIT frequently during the lockdown and have exercised my whole life. Now I’m doing 15-30 minute classes online that are less than what I used to do because I really don’t want to hurt myself other ways. I got really fat taking steroids at the hospital but thankfully was weaned off them. It’s a slower process but best to be safe.
I used to teach exercise and have done some challenging sports events in my time so it’s very difficult to be less active but just think about all the things in life you value more and go with Your flow…
Good luck to us all!

I had an aneurysm with my fistula amongst my malformation so yes it’s definitely possible. Unsure how common tho

Think the Dr said the aneurysm was caused buy my fistula

But I agree with others too. Don’t stop life but definitely take it easy and be sensible abd go with what your drs say :slight_smile:
Hope all turns out for you well

aneurysms are common to develop. Since my first update on here a few years back, I have developed multiple aneurysms as a result of my AVM. The AVM was removed in two surgeries about 4-5 years apart. The first in November 2011 and the second in April 2017. During this time they discovered 2 aneurysms that were not present during the first surgery. My first surgery only removed about 40% of the AVM. The 2nd surgery was thought to have removed ALL of the AVM but unfortunately, in my case, the AVM has started to reform. During my 2017 surgery, Dr. Speztler used Gortex Wrapping for one of the aneurysms he saw but was unable to address the others safely. Following my surgery, I now currently have 3 active aneurysms and one is dormant because of the Gortex. All of the aneurysms were thought to resolve themselves after the AVM was treated but instead more keep forming and they don’t know exactly why, since imagining doesn’t definitively show a nidus(AVM) currently. They can only see the starting of entanglements and “strange, abnormal vessels” as they call it, and deep drains with no obvious starting or ending point. While my case is a bit on the complicated side in general, AVMs can form aneurysms. EITHER can rupture and thus listening to the doctors about treatment options is best. For a 2nd opinion that is worth so much more than the cost ($200), you can submit all your health records, imaging scans to the Barrow Brain and Spine group, and address it to Dr. Michael Lawton. He is the director and you can find more info on their website at www.barrowbrainandspine.com. They are the BEST IN THE WORLD in dealing with AVMs, aneurysms, tumors, and brain/spine-related conditions. They are the leading pioneers in the field. It is worth the 2nd opinion from them. Technically all the neurosurgeons in the cerebrovascular department including residents, fellows, attendings, and teachers all review your records and come to an agreement on the best plan of action for your care. Literally, with 1 submission, you are instantly given more than 20 professional, skilled opinions. Message me here for more information. They did my 2nd opinion and 2nd surgery.

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Ok. Thank you all for your help!