Gamma knife / Embolization

I heear you on the working out . I was going to start back today but I’m still a little sore from the angiogram with some bruising. I spoke to my trainer at the gym and he said when I come back I can take it slow . We do a program called Pillar is weight lifting and a hitt so I will go at that slowly until I meet with my DR on March 10. Did you have an angiogram and if you did any soreness afterwards. Thursday will be a week and I have a bruise on my inner thigh not at the site and it’s still a little sore .

Just after the angiogram I wasn’t in any condition to lift weights. I had my follow up angiogram five weeks post my procedure - and, I felt out of it.

Take it easy for a while - I know it’s so hard to do.

I’m horrible at following MD’s advice, but I’m glad I did this time - when they told me nothing over 10 pounds for 3 months - I lifted nothing over 10 pounds - last few week or so, I did lift a 15 pound weight a few times. Then I eased into where I’m at now - I’m again lifting right around my PR weight - and, I feel fine now. My neurosurgeons literally said - go for it at 3 months. It took me 6 months post procedure to workout like I am right now.

I’m a trainer too btw, or at least was one for a while(NASM certified & all). My trainer talk recommendation would be - nothing heavy, maybe a 10 pound max weight per arm - no high intensity interval, walk, don’t sprint - at least for now, until you get more info on how volatile your condition(AVM) is - I’d focus more on very good form & movement + cardio

It sound like you’re in good shape already - some time off from fitness isn’t always a bad thing. . . Mine really worked out well, since the gyms were closed when I was down

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Thank you yea I did some arms today with 5 lb weights and I’m glad I didn’t go into the gym today . I’m still a little sore where the angiogram was . I definitely will take it slow and appreciate the advice.

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My daughters avm haemhorraged the day after an extreme gym session. She was 24 and a very fit gym instructor. Please be careful of the gym!!! And also be wary of embolisation and surgery. Her embolisation left her with lifetime disabilities.

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Hi I’m sorry to hear about your daughter.
Im not sure what form of treatment I’m going with yet I meet with my DR in a couple weeks.
I’m very nervous befit sounds like there are risks with all the treatments. I know my AVM is very small and I’m over 50 so I’m not sure what going to happen. What happed to your daughter after embolization?

Hi Cloe,

I wanted to share with you my experience of my AVM and GK surgery. I was 50 when they discovered the AVM in my brain. I did have symptoms throughout my life up until then - mainly seizures which was diagnosed in my teens as epilepsy. At aged 50 they said the seizures were caused by the AVM not epilepsy but that there was no evidence of a bleed - apparently the AVM was the size of a golf ball - pressing on my brain. I had GK surgery when I was 50, which shrunk the AVM -but not enough because it was so large - so 14 months ago I had more GK surgery to reduce it and the risk of stroke further and now await the results. Your story resonated with me because when I found out about the AVM and the proffered treatment, I too was scared and anxious, but all I can say is that for me it worked out - twice now I have experienced no bad side effects from GK surgery and only positive results. In fact a couple of weeks after the first GK surgery I was lifting heavy furniture when I moved home - but on reflection although there were no adverse consequences I think I should have been more careful. Anyway, 7 years on and 2 lots of GK surgery later, I am alive and well with no side effects, and am seizure and headache free. I wish you the very best Chloe - the glass is always half full.

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Hey, don’t listen to the good or the bad & put it on yourself - you’re different. . . We all are

Only thing we all have in common is we get scared of this like no other

I’ve done a lot of searching and reading - no one case is alike. . . That’s why I say focus on research for your own specific situation. Get a great MD team & try to go with the flow of what they recommend.

I already said it before - personally, myself - I’d never in how anything get brain surgery until it’s completely necessary. But, that’s me - I don’t recommend this to anyone. . . No one, including my neurosurgical team really have an exact idea on how I recovered from multiple hemorrhages so well.

When the big one happened, I lost mobility & was in severely bad shape - I barely made it to my embolization procedure. . . Yet, again - I snapped back to what I almost consider normal.

Hearing all of these sure is rough tho. I’ve had enough good medical professional contact to learn a great deal about these & their treatments. And - it’s a very slippery slope - between possible side effects of the work required to possible outcomes when these are left on untreated.

I so wish u luck - and, us all. . . In many cases that’s the only thing that gets us through this.

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Thank you so much for this response. I needed it today I’m having a bad day . I feel like I have to watch everything I do even though I just worked out at my gym a week ago. But after my angiogram I’m nervous and honestly still a little sore and bruised. But I know mine is small and I believe it has never bled. I think a good sign is my DR is not seeing me until 3 weeks after my angiogram to discuss options.
But thank you again I’m a very active person and this has stopped me in my tracks . But I know I have to keep moving for my mental health.
Thanks again and I’m so happy you are doing well . Best wishes

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Don’t stop moving - I never did. . . Guess that’s why they wouldn’t turn off my bed alarm in ICU. Just move a tad more cautiously for right now

But, I think many of us have the same feeling of “everything was fine just a week/month ago”

I know I did - hearing my rupture diagnosis felt like a hemorrhage of its own

Thank you I’m going back to the gym on Monday I just won’t push as hard . I have too I will just be cautious watch my :heart: rate etc. and I won’t lift heavy .
I guess being healthy helps too

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It’s such a slippery slope - what my neuro team told me is that if I wasn’t in such extreme physical conditioned shape, most likely I wouldn’t have bounce back anywhere as fast

But, my question is - what about the strain? Would it have happened still at the same age - or?

Who knows, I just keep on keeping on - We all should, as much as we can

She developed severe short memory deficit post embolisation and before her surgery which took place 2 weeks later. Surgery went well and they removed the avm but her stm deficit has not improved at all. In 15 years! 13 years later we discover that the catheters used for the embolisation got stuck in her brain and couldn’t be removed. We were never told!! She has 2 catheters running from her brain to her groin that have been there all this time causing pain whenever she tries to exercise for even 10 minutes. The ‘best’ brain surgeon in Australia (apparently) was head of her team and performed the surgery and was responsible for not informing us of the adverse outcome. Also responsible for not advising us of the risk comparison between having treatment and not having treatment.

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This is awful. Are they able to remove this?
I do have one of the best neurologist in our city. I got very lucky. I have done a lot of research in him . I wish you the best

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Hi Cloe, I’ll add my story to see if it helps. My AVM was discovered at age 62 following a seizure will working out at the gym. They were not sure it was a heart attack or a seizure, so I went through every test imaginable. They assume I’ve had it all my life, but had never caused problems before. It’s a right frontal AVM and good sized one at that. My nuero team decided to monitor it and I was advised not to lift weights over my head. About one year later I had another seizure after working out. I was put on anti-seizure medicine as they continued to monitor. I slowly but surely built up my exercise routine again. Fifteen months later I was not diligent about taking my medicine twice a day and had another seizure will out running. Out of caution, the nuero team decided I needed to reduce my workout routine and monitor. In September of last year my AVM bleed and I had a stroke. I assume it had something to do with weightlifting I did that day, but I don’t know. In December I underwent radiation treatment to start the healing process. In hind sight, I was given the option of the treatment after my second seizure, but declined. My nuero team was 50/50 on it. I should have had it done. The past six months have been the most difficult I have ever gone through. I’ve gone though speech therapy to learn to write, speak and improve my immediate recall. It’s the hardest thing I’ve ever done. I’m now walking up to 6 miles per day and starting to do some intermittent running, as long as my BP does not exceed 140. I can only lift 5 lbs weights until my next MRI in 3 months when they check on the healing process. But they just did allow me to play golf again, carefully (but no skiing). My only advice is to follow the advice of your neuro team. Don’t walk into that gym without consulting them on what you can do. My team gets back to me in 24 hours if I have a question. I always pushed it and it cost me. But 3 months ago, I could not have written this. I know I’m one of the lucky ones. While sitting in ICU for three days, the patients I saw being admitted had me counting my blessings. I wish you good luck.

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I have read this on here & a few other medical reports of catheters getting stuck & left behind

I have my neurosurgeons on a recording, where I asked them a lot of rvery specific questions. One of which was; was anything left behind + were any devices used & left inside. They said absolutely not! And, they seemed quite prideful of that - Onyx embolization agent only(both weights were used, 18 & 34, 1.5cc’s of each). . . I did this for a safety precaution. If something happened to me later because of something that went wrong, at least my wife would have a solid case against the hospital. . . But, no - Barrow Neurological legitimately do good work. And, I mean real good - now, I have spoken to about a half dozen of their previous patients & all have said that they are best at what they do & I was lucky to have them do my procedure & testing - sure seemed like it, but brain surgery seems like a big thing to me(I think anyone). . . I know there are other excellent neurosurgical specialists out there - but, these guys were something else. . . They truly changed my mind on a what a medical professional should be & act like. . . I have zero doubt in my mind that no one else could have performed what I needed to get done with the same precision they have.

I recommend BNI to anyone that has anything brain or spine related that needs to be taken care of - everyone who was their previous patient, agrees

Just to see myself go from a complete medical nightmare, to be fixed within six hours - seemed unrealistic. . . And, they did it - on the first try - that definitely says something. Yet, their neurosurgeons are the ones that call me the luckiest person alive. Lol

Hi there yes I am waiting for a response about working out and if I do I won’t be lifting heavy. Also he did say he wants to treat it and I trust my DR I can’t not treat it and something happen to me . I have a 16 year old a 15 and 14 year old I have to live for and a wonderful husband, so I will have treatment. He mentioned embolization with radiation mine is not that big I think it’s only 2 cm .
I see him on March 10 and I will now from there . Beat of luck to you :blush:

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Chloe:

You have had so many positive responses to your post, so I will just say “welcome to the best group of AVM-ers in the world”. As you are now aware, we give encouragement and support whenever it’s needed. The AVM process is long and scary, but you are not alone because we are here with and for you. Try not to take it in all at once because that will overwhelm you. Take one step at a time. Be patience and call on us if you need to. Wishing you all the best!

Sharon D…

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Hi Chloe. Just wanted to say Hi and welcome to the site. I’m 47 and my AVM was discovered when I was 14 and it caused me to get hydrocephalus. Its position (Cerebellum) is such that it blocks the normal escape routes for CSF. I had an operation to put in a Shunt and that has needed revision 4 times now. But just like yours my AVM hasn’t ever bled and I don’t really have any recognisable deficits from it that affect my everyday life. I’m a bit clumsy, have poor balance sometimes and get a little tongue-tied. But that could be a description of many people. I guess I’m in the minority on this site because I have chosen not to treat my AVM. Truth be told I am aware it would be risky anyway and the odds of complete obliteration are low. But also I think I once read somewhere that if you haven’t bled by 50 that’s a good sign. And in any case it seems to me that treatment carries its own risks. So after weighing it all up I’m taking my chances. I realise that some may think me naïve. But we have to do what we think is right for us don’t we? Very best of luck. Lulu x

Hi Chloe,
I did have an angiogram and felt perfect the following day, no issues at all. But we all have to simply listen to what our bodies can and can’t do…and we’re all different.
Sorry for not responding sooner, it’s because I try not to visit these pages too often as I can get caught up with reading everyones stories and there are a heap of not so good ones…
Exercise is a big part of my life, or it was…now I’m working very hard on the dietary side of things and looking deep into what changes I can make to calibrate the difference - and this means from all angles!
Good luck to us all
Jo

Hi there thank you for responding. Do you workout anymore and did you have any treatments done? Also I am still trying to do some workouts and I hope head back to the gym .