Support for Post AVM Brain Surgery

I just wanted to send a message through about post AVM Brain Surgery
How long until I can return to fitness and not feel such intense head pressure that I feel like throwing up and I feel an intense migraine??

For me it’s well over 12 months since my surgery and I still am getting such bad head pressures and I could do fitness to an extent like two months ago and all of a sudden when I do a workout now like right now I’ve just had a massive head pressure headache and I feel like chucking up? When can I return back to normal
When can I go back to fitness
It’s been over 12 months
Why am I not healing ??
I’m young I’m fit why the heck is so much head pressure coming to me all over again

Welcome to the board - no one really wants to be a part of

But, it’s amazing that it exists

I was slightly over double your age when my dAVF/AVM ruptured. I lost all sensory functions & motor skills. My AVM was obliterated 100% in first attempt - what made me so special/lucky? I don’t know yet

I had to relearn how to walk, had excruciating pains in the area where the hemorrhage occurred for months post embolization.

When I was released, I could only stand for a few minutes at a time. Few weeks, I could walk for a few minutes at a time - before the feeling of “I’m gonna fall over” came in.

I was not allowed to lift more than ten pounds for 3 months. By mid month three, I was able to lift ten pounds per arm about a thousand times per day.

At the end of month three, I was able to do about two pushups. I started putting together a home gym(since COVId still had everything mostly under lock down).

By month six I was back in the gym - face mask & all. I was barely able to workout for short bursts before I had throbbing or a dizzy spell come over me.

Fast forward to now, two years & two months later - I’m at my pr on my bench. I’m still trying to be safe as possible, but fitness has been a huge part of my life. And, according to my neuros my extreme physical abilities is what brought me back this intact, this fast.

At this point, I’d call myself having zero deficits

Do what you can, you had a much bigger operation than I have. Way younger, so you will recover at a different rate. Push yourself, but not passed the point of safety. One injury will set you back way too long < it’s not worth the effort. . . Listen to your body, very carefully. 12 months for someone post resect I would equal to me post embolization at about one month, if that - and, that’s just an opinion & guesstimate

Are you on any anti seizure meds, BP meds, etc.?

The road to recovery isn’t a direct path, unfortunately. I’ve had set backs, to where I couldn’t workout for weeks at a time due to stroke like symptoms caused by damage to my CNS < thankfully that was the only cause

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I think it does take an incredible amount of time to feel “normal” or close to normal again.

Getting to the point of feeling like vomiting sounds serious, so do take medical advice on that, but as Mike says, I can also testify to recovery not being a straight line and I also agree with him that the level of exercise to take up post op is significantly less than you would want. It is vital to keep at a level that isn’t giving you challenges.

Like Mike, I “just” had an embolisation. It took me 18 months to 2 years to get back to “normal” buy I didn’t have the damage of a stroke to contend with. Honestly, it takes a long time. In all reality, you are probably recovering fine. Believe it but take it steady and if you get worrying signs, get checked out.

Very best wishes,

Richard

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Hey BuckyBarnesWife,

Yep. That was my question to the neuros too. Initially, they put it back on me “We operated, we fixed. It’s got nothing to do with anything we did. We haven’t heard of that happening before… It must just be YOU”. So, I tried to regulate my activity, not do ‘too much’, but how much is too much??

Well, it turns out I found out, how much is too much when the wife found me crumpled on the floor one day. She called the ambulance, and I was shot off to hospital. I got this young neurologist and she said to me (and I quote) “We don’t know why but some patients can go through neurosurgery and bounce back almost unaffected and yet for other they can have no end issues. We don’t know enough about the finer intricacies of the brain” This really struck a chord with me because I’ve been given allsorts of pseudo diagnosis ie “It could be ‘X’ or it could be ‘Y’…”, but no real answers. The neurologist went on to explain 1mm left or right can make a huge difference. How one patient reacts vs another patient can be vastly different.

Now, head pressure is something I have LOTS of experience with and it is something to be very aware of. Raised intracranial pressures can be very serious, even life threatening if ignored. There needs to be a balance of blood, cerebral spinal fluid and brain matter within the skull. If one of them is out of balance I become VERY symptomatic ie A headache from hell, blurred vision, balance issues, nausea, vomiting. My last major neurosurgeries were back in 2013 and even today it can be a very fine balancing act trying to manage my triggers ie activity, sleep, daylight, noise, medication so as not to have my symptoms overwhelm me.

“When can I return back to normal?” Honestly, nobody can answer that, not even the Dr’s. I tried to get to ‘Normal’ and as much as I forced myself to get back to some sort of normal, it hasn’t happened. The more I pushed to get there, the more my body pushed back. I’ve had to change my ‘normal’ for a ‘new normal’. I’m not happy about it… …OK I’m frustrated as all hell about it, but I know if I push my limits there is always a consequence for doing so. I can push myself today and get tasks done, but it could take me 2 days of agony, in bed, in a darkened, silent room to recover. I have to balance it out. I try to break tasks up into processes 1,2,3,4. I do process 1, then reassess ‘Am I OK?’ if I am I continue. If not, I have to stop OR be prepared to pay the consequences for continuing. This is all nothing like my previous ‘Normal’, my former normal had 2 speeds. Full tilt and stopped. I’m lucky to get to half throttle now without being symptomatic and I HATE it. But this is now the reality I have to live with.

Merl from the Modsupport Team

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I ca relate similar stories of recovery, and feeling “normal” again. After my bleed I was allowed to walk only, lift no weights etc…6 weeks later I was allowed to bike and lift light weights. I had gamma knife at 6 months and was told to do whatever my body allowed. I had the usual warning that I know what it feels like when something goes wrong, and go to emerg. I was lucky to not have to go to emerg.

I again started jogging, swimming, biking and weights. Although I have never gone back to the heavy weight lifting but now do triathlons. I would say for the first year plus, the only time I felt normal was riding my bike. Why? I have no idea, maybe the amount of exertion, my heart rate, the breeze…for whatever reason it was truly my happy place for a long time. I would say somewhere in year 2, maybe even longer I started having these more normal feeling times. Im not sure if maybe I just got used to it, and it became normal.

Stay at it! Know when to ease up, it is a long journey. Talk with your Dr. about the headaches, stay hydrated properly…and give biking try if you don’t bike! No medical book in the world would say that, but like I said for a long time it was my only true happy place! Take Care, John

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I “think” this is where are most of my probs stem from, since every time I feel off it’s “stroke like” - from what I can tell(I’m far from any form of medical expert), it’s the scarred area where the hemorrhage occurred that gives me odd sensations. Where the 3.xx cc’s of Onyx glue sits gives me absolutely no sensation. My dAVF is about an inch or so back from my left ear on the same level towards the back of my head. My rupture occurred in the the left forward upper quadrant < and that’s where I get odd sensations, of pressure, something heavy, etc, at certain times(under strain, dehydration, etc.)

So - you’re recovering from both > the hemorrhage itself & the the craniotomy to remove it. IMO(which again, I’m no medical pro of any form) - you sound like your doing well(since you’re attempting to exercise)

Shoot, when I hemorrhaged I thought I was done for. . . Not every day you completely lose all motor skills & the hospital tells you to call your loved one cause most likely you don’t have much time left.

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Only you can listen to your body and push gently on good days to improve your fitness.
I don’t think I went to the gym for 12 months but I did stuff at home. When I went back to the gym I did low weights and more repetition. After 3 months I upped some weights and that set me back.

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Now, head pressure is something I have LOTS of experience with and it is something to be very aware of. Raised intracranial pressures can be very serious, even life threatening if ignored. There needs to be a balance of blood, cerebral spinal fluid and brain matter within the skull. If one of them is out of balance I become VERY symptomatic ie A headache from hell, blurred vision, balance issues, nausea, vomiting.
@ModSupport
Hi Merl
This is going off track from the original post but could explain many of my experiences. Assuming from what I’ve just read above this explains why 1 day I could ride a bike 20 miles on smooth tracks but the next week only ride 4 miles on a downhill bumpy rough track. Some days I can function well, others just Ok and and some just don’t work at all but from the outside I look the same, eat and drink the same.

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Hey Tim,
“This is going off track…” A little maybe, but I think the sharing of experiences on this neuro journey is paramount. If something touches a chord with you, then you comment. Fortunately, not everybody travels this route, unfortunately, we do and it can be EXTREMELY isolating. Prior to me finding Ben’s Friends I thought I was one of the only people having these oddball symptoms post neurosurgery. The dr’s were making it all sound like it was just me. I really was questioning my own sanity. I went looking for answers and found these people saying ‘Yea, me too’. I cannot tell you how much of a ‘phew’ moment that was for me “So I’m not the only one”.

Ohh yea. I get that too ‘But, You look OK…’. As I often tell others ‘You want to have a look from this side’ what they can see is a micron of what I’m dealing with. I have these ‘Masks’. I can put on a happy mask most of the time and can get through a day. When people see me looking like hell what I’m ‘trying’ to manage is 100X worse than what they see, even my masks don’t hide it all.
I’ve often explained it like this

Some days I can leap a tall building in a single bound(OK, so a bit of exaggeration)
But some days I’m lucky to be able to crawl out of bed.
I just never know what today will throw at me.

When it comes to rare conditions we have to learn to manage the best way we can around our conditions. Others may not comprehend it all (as if we understand it all ourselves) but I have given up on meeting other people’s expectations. If I can reach my own expectations, I’m having a good day, that’s enough for me.

Now, please understand it has taken me a L.O.N.G. time to get to that point of acceptance. I fought against it, something terrible, for years. I never wanted to accept THIS but the reality is I have no choice. I now have to play the game with the cards I’ve been dealt (even though, I still think the deck is rigged).
I have no choice.

Merl from the Modsupport Team
P.S.

I can’t even ride a bike now. My balance is such a mess, I’d keep falling off the damn thing :rofl:

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Ha ha < not

I just started dealing with this. . . Again, maybe the weather - I have no idea. . . It’s somewhere between dizziness & the feeling of I stood up too fast. It comes in almost randomly at times & it’s quite annoying to deal with at times.

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It took me 12 months so I don’t feel anything

I felt like a small cover“
It was an awful feeling like I felt where they opened it and close it again

I walk around 10 000 steps per day but I try to do it in two walks.

I don’t think I will ever lift weights like crazy like when I was 28 (1000 pounds leg press)

I don’t know why I thought that was cool :sunglasses: back then

My happiness now is to remain active

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Hello, Sorry you’re suffering. The good news is that you’re thinking in the right direction by wanting to workout. I think all the questions you have are best answered by a doctor. Best wishes, Greg

OMG Merl, If I have to read about docs causing people to question their sanity one more time I’m going to scream! As a mod. you must see that a lot.
At that insane, horrifying time of learning how to cope with AVM symptoms for a doc. to make you feel that is ridiculous. I’m struggling to see any positive result that could be gained by a doc causing such a feeling. Bless your heart for somehow maintaining a good attitude and passing your wisdom on here. Greg

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Yes, especially for rare conditions. We often go to dr’s looking for answers, often we have an expectation of getting answers. But when the medicos don’t have the answers or cannot identify a cause, the simplest answer is to put it back on the patient. It’s also a form of protection for the medicos when they don’t have the answers ie “Don’t blame me, it must just be YOU”. I was always told ‘The Dr knows best’ and for years I took this approach. They placed me in a psych ward because "You just can’t be having THAT much pain. We can’t find anything…’ so I ignored it all. Odd symptoms, weird sensations etc and got on with life.

So, I’m driving down the road one day and the lights went out, I couldn’t see. I pulled up, called the wife and she took me to the dr. He ordered a scan and came out with the line ‘Ohh, look what we found…’ like it was all something new. I wanted to SCREAM, I’d been telling them for years/decades ‘Something’s not right’ and made out to be every type of crazy. GGGGrrrr.

Now, I question everything. Some medicos work on a need-to-know basis and as one neuro said to me (and I quote) ‘You’re just the patient… …You don’t need to know’. WRONG!!! If it’s about me, I need to know. I need to know the ‘What’, I need to know the ‘Where’ and I need to know the ‘How’ of it all. Some medicos don’t like my questioning, some are actually quite anti about giving answers. NOPE!!! This is about me, not them, not their precious egos and I want…, no, I NEED answers. I have become a strong self-advocate and I don’t play their games anymore.

It was all made out that I was the only one having these oddball symptoms, then I found Ben’s Friends and found that I’m not ‘…the only one…’ at all, in fact some symptoms are rather common. It’s only by sharing our experiences of this god damn awful journey that others may also have that ‘PHEW, so it’s not just me…’ moment.

Merl from the Modsupport Team

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Merl, Sorry you had to go through all of that crap on top of the intense physical and emotional pain we AVM people go through. Again, I’ll say bless your heart for taking that and converting it into the compassion and wisdom you share here. Greg

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