Sport with Vessel Clips

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Hi everyone!
I’m Christian from Germany. On 08th of December 2021 my AVM ruptured. It sat just under my right occipital lobe. After quite a struggle to be taken serious by the doctors, I was finally treated with an initial embolization and a follow up surgery in which they removed the AVM entirely and shut the remaining normal vessels via vessel clips.

When I was laying on ICU the chief neurologist came to give a visit. I’ve never seen him before, and as far as I know he was not directly involved in the surgery. I suspect him to be a narcist.
He took 3 minutes to tell me, that I might drop dead within the next years, as nobody knows how secure those vessel clips actually are. He even compared them to regular bread clips. In general he was extremly derogatory and gave me plenty additional psychological harm.

Well, now 1.5 years have passed and I kinda have just stopped thinking of all this.
I actually have quite a normal life, as my neurological damage basically just consists of a minor loss of my visual field, that i usually can compensate. I have no pain, or motorical impairments or anything like that.

But I’d now like to start with sports again. I want to hit up the gym, as I feel like it is necessary to prevent back pain and such, as well as would help my psyche.
But since told encounter I am really terrified to to anything that would raise my blood pressure. Non other physician could tell me anything about how such exercise would affect the blood pressure in the brain. I don’t expect to provoke another brain hemorrhage immediately when i would return to sports, but I am afraid that it might cause something similar in the long run. Maybe in 15-20 years. Basically I am afraid of something you could describe with “constant dripping wears the stone”.

Is anyone of you in a similar situation, or has something to say to this topic? That would mean a lot to me, as somehow no physician was able to give a proper answer.

And I got one additional question, which I ask you to answer in a sensitive way:
Do you think it is realitically speaking possible to live up to a normal life span, with such a vessel in my brain?

I was basically turning 27, when my AVM broke. Since then I am terrified that my life is basically 2/3s over. All those fears can be traced back to that one chief physician.

Thank you so much for any reply. I am quite glad I found this forum!

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Hello Christian! Welcome to AVM survivors! It’s great that you found us and I hope we can help you a little along the way.

There are two main things in your post, so I’ll offer my thoughts on the two things I can see in there.

.1. Some neurosurgeons are complete a**holes. I’m completely with you. The guy who did my embolisation (I’ve only had an embolisation) was a star. The neurosurgeon whom he reported to was an ass. It seems common.

.2. Most people are advised to take up sport and exercise gradually but this has certainly not stopped people working that up to a higher level. I can think of @JD12 who gets involved in iron man competitions and @mike_az_21 who is pretty keen on weightlifting. I do think moderation is sensible.

I think the only sensible thing to do is to go carefully, steadily and if you start to feel like you’re doing too much, don’t progress further, or wait much longer before stepping anything up. It is important to exercise at least moderately and should help you manage your blood pressure rather than endanger it. More heavy exercise is different and I believe could impact your blood pressure the wrong way.

The way I look upon my operation is that the whole purpose of it was to reduce my stroke risk back to that of (in my case) a normal 50-year-old. The purpose of yours was similarly to reduce your risk back towards what is normal for your age group. I would put to one side as much as possible the idea that you’ve already burnt ⅔ of your lifespan or, if you do look at it that way, you need to make sure you do actually live the life you’ve got. For me, I’m still thinking I’ll get to 80 perhaps. It might be I only get to 70 but that reinforces for me the importance of doing the things I want to do now, not saving too much for later years.

As for his comments on the clips!!! That’s just ridiculous and unhelpful! I’m sure we have patients here who’ve had clips in for decades. Dismiss these things. Live your life and don’t look back is how I approach it.

Best wishes,

Richard

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Thank you so much for your reply.
I am currently busy and will answer tomorrow in a proper way, but. But thanks already for the reply! It means a lot to me!

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Hi Christian,
I would definitely recommend speaking with your neurosurgeon (the one that actually performed your procedure). I too had my AVM removed via craniotomy (exactly one year ago today) (I had two embolizations prior to that) and at this point my neurosurgery team has cleared me for any exercise and definitely did not have any hesitancy for me to gradually build back up to my prior level of fitness (not a weighlifter, but I do enjoy strength training). They confirmed successful, complete removal of the AVM via CT-Angiogram about 6 months after the ressection. I think the best course would be to speak to your neurosurgeon. I have found that the more general neurologists, while lovely and intelligent, have not had the experience with AVM removal like the actual neurosurgeons, especially not like the ones that have actually been in my head. Hopefully your neurosurgeon can provide you with some helpful guidance and speak to your outlook and fears. Good luck and I wish you the best.

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Welcome Christian! 7 years post bleed for me and 6 1/2 post gamma knife. I built slowly after my bleed, all with the approval of my neurosurgeon. I’m doing Victoria Ironman 70.3 on Sunday, and have done two full distance(Wisconsin and Penticton), and 2 other half and a few other neat ones like he Escape from Alcatraz. I had a seizure in January but my neurologist says good to go, so he is happy my risk is low.

I plan on living until a ripe old age, and am 55 now. Plan to be around for a while yet! I figure I have one shot at life and if its 20 more or 30 more, or 5 more I plan to make the best of it. John

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Oh wow, I really have to say, that it feels quite wonderful to actually be able to talk to others that have lived through similar situations.

It is nice to see some sportsmen in here, it actually placate my anxiety. I’ll contact them.
As I don’t see myself actually getting into bodybuilding or something of that extent I somehow always thought of my fears to be not completely rational. I’ll probably won’t become too passionate about it, but i intent to stay fit. Since the bleeding I somewhat became hyper aware of any bodily deterioration (this feels like an odd phrasing of mine, please mind I’m not a native ^^) that seems to began since my mid-twenties, as well as all the stress-induced side-effects of the AVM. And if it helps me to stay motivated being active, it might be a positive aspect of all this.

I’d be happy to learn to know someone else with such clips, and ideally wise someone who has lived with them for some time.
Nevertheless, I try to focus more on the sheer luck that I had, that I am still a fit as I am, but from time to time anxiety comes up again.

EDIT: I just deleted the same post, as I think I posted it under a wrong reply. Hence the removed comment below.

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I happy to read your comment, as your situation sounds quite similar to what I’ve been through, when it comes to the surgery.

I’ll meet up the my surgeons in about two months, as I’ll be having a final MRI.
I’ll definitely will ask them again. I still don’t really understand why it seemed to be such a problem for them to give me definite answers.

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That is uplifting to hear! Thank you for replying!

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I think one of the troubles of anything associated with our brains is that we all get rather hyper-aware of noises, feelings, pulses etc. It’s natural. But it really does get in the way psychologically and I think it does so partly because recovery from brain surgery takes a lot longer than we expect, so we worry about it for all of that time.

My head felt very weird post op and it took me about 18 months - 2 years to decide to mostly ignore how it felt and just get on with life. If I can encourage one or two other people to cut out the long term worry, I think it helps.

I’ll have a look round for people talking about clips but it is certainly a perfectly common method of closing off things like aneurysms and AVMs. I hope some will read this thread and volunteer their story.

Best wishes,

Richard

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You’re right, I have had quite big troubles with this hyper-awareness and thus have found many odd things of my body which initially caused me to panic. 3 months past the surgery I was convinced that i must have cancer and that I might lose my hearing additional to part of my sight. I actually had another surgery on my ear-drum because of that, as it probably had been perforated since young age. I guess it was the right decision to close it off, but it definitely was not at a great time in my life - as I rushed to get it over with due to my anxiety.
The problem with that was, that even though the surgery on my ear seems to have worked well, things again fell different than before which triggered anxiety that things might not be as they should be.

After countless appointments at the doctors office, I eventually realized that likely any healthy person would find some weird stuff at their body, that might freak me out in such situation. Since then, I feel like I less likely prone to be overwhelmed by anxiety. Nevertheless I still avoid articles talking about health topics and such, as I don’t feel like I have the necessary resiliency to not be put off by such.

Besides that I just wanted to mention, that it initially was quite a spontaneous idea to register in this forum, as I just wanted to asked the sport question. I wouldn’t have thought, that it feels like such a relieve to finally be able to talk to others, that have experienced more or less similar situations.
Thanks to anyone involved!

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Dear Christian,

I am a 20-year cancer survivor and a 10-year AVM survivor. My best advice to you:

  1. None of us knows how much time we have in this world. Worrying about our demise does not improve the quality or the quantity of our days. It can only diminish them.

  2. You have already done what you can to address your risk of another brain bleed. If you are concerned about high blood pressure, a healthy diet and fitness are two great ways to keep it low.

  3. Engaging in sports is very important to the quality of my life. Without physical activity, my physical and mental health would suffer. If you feel the same way, and you have not been restricted by your doctors, by all means, do what you need to do to live your life to the fullest.

If you are concerned about engaging in high-intensity exercise like weightlifting or sprinting, you might try a moderate aerobic activity like jogging, swimming, cycling or tennis. I like to cycle, swim, downhill ski and ride horses. My neurosurgeon never restricted me from these activities, even when my risk of a hemorrhage was high.

Peace be with you.

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Hi, mine ruptured in June 2021 in the left frontal lobe. I wondered the same thing about the clips and asked my neurosurgeon over a year later, he reassured me they are ‘life long implants’ and cannot break off. In regards to life span, I’m continuing with a positive attitude and trying to remind myself I will live a long healthy life. We’re lucky they were removed at a younger age in regards to recovery :slight_smile:

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Thank you both for your reply!
I’ve now heard multiple cases of people that assured me that they still are active and in the upcoming month I’ll visit my neurosurgeon and will ask him a final time.

I’m looking forward to weightlifting instead of some cardio exercises as I usually have problems gaining weight and already are doing some cardio exercises regularly.

I suppose my doctor will have no concerns. :slight_smile:

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Hello @Goldmund

Post rupture and surgery I still had to have help with walking never mind going to the gym.
Eventually I got back to the ability of going to the gym and was told to take it slowly, using baby weights for 6 months.
Later I did some weights, a lot of cycling and even high altitude trekking.
Your body should tell you what you can do. I think you’re more likely to die from a snake bite than your clip coming off.
On a negative note I do think that when i can not exercise I will have lost my quality of life and take a different pathway to heaven.
Each of us will have a different AVM journey and now I’m over 50 I find hard challenges. Life can never be the same again after many days in intensive care.

Good luck
Tim

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thank you for your words, tim. :slight_smile:

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Hi my name is Kat,

I was 31yo when we found out about my AVM 5yrs ago now. The short end of it is that I only had two options for fixing it-gamma knife radiation or open brain surgery. The first was not a guarantee however; I was told that I might have to repeat the procedure and that I would not find out if it was completely gone for at least 2yrs. and on top of that that it could rupture at any moment and then I would end up having emergency brain surgery anyway! I didn’t want to live the next two years of my life in fear! I didn’t want to wake up everyday wondering if it would be my last or if I was going to hit the ground and wake up in a hospital not knowing what happened! So after a lot of prayer and conversations I chose craniotomy. My neurosurgeon truly did not want to do the surgery but said he would if that’s what I chose. However, he gave me a 20% chance for survival and if I did then a 14% chance that I would not be a vegetable! Can you believe that?!? While I do suffer from a large number of after affects: hearing loss, occasional speech issues, long and short term memory loss, full body weakness, use of a colostomy, a bladder stimulator and some other things… God and I decided to prove them all wrong!!!
I am so sorry to hear about what happen when you went through the worse moments in your life BUT:
YES: you can go to the gym! YES: you can do sports! YOU CAN DO ANYTHING YOU WANT TO DO! JUST KEEP LIVING!
DO NOT LET YOUR AVM OR WHAT SOME NARCISSISTIC NERO DOC WITH A POWER TRIP RULE YOUR LIFE!
You have been given a second to live-reach out and take it!!! No regrets! As long as you take any meds you need if any and take care of yourself, enjoy your life! 🩵

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