Post of symptoms or new symptoms post surgeries? Thoughts?

Hi everyone (mainly a thought for site administrators)

Hope everyone is doing as well as can be :slight_smile:

I had an idea that may or may not be a good one that’s been on my mind for months

Long post sorry!

There is quite a bit of info out there for avm symptoms prior to treatment but not post surgery, post embolisation, everyone seems to wonder "is this normal " does anyone else have this symptom AFTER surgery

And they are ofyen worrying symptoms and seems like most ask their nuero team and get answers like no its fixed… that must be something else which is frustrating to say the least

I know many others that had a similar experience and I am going thru it now (well almost a year)

Obviously people will have individual questions but would a topic on “what to possibly expect after surgery” be a valid one for people to be able to read

obviously everyone is different and recovery is different and symptoms are different for everyone but I think it would be a massive benefit to people to know that there are possible NEW symptoms after surgery which may be “normal” or common but Neuro teams dont know them. Rather than thousands of people worrying and wondering due to lack of data out there

I’ve developed some terrible symptoms post surgery and my general doctor ran major tests expecting to find I had a virus or something serious wrong. He ran every test imaginable which was great as I never see a Dr (and he knows I’m the opposite of a hypochondriac) truely expecting to find a major issue to treat. Only for all the tests to come back 100% great

Now he said to me… because brain surgery is lagging behind more traditional bodily issues and surgery, these brain surgeons are making great skilled advances but are only just touching the tip of knowledge of the brain and overall know not much compared to other parts of the body and how to fix issues and they seem to be really lacking the knowledge of symptoms and side effects of AFTER surgery. The non life threatening but scary symptoms still

I know a lot of people are told, you’re fixed. Nothing wrong now. But have additional symptoms than prior to surgery. It’s great you’re at a lower risk of stroke or death but very scary when you have major things happen or change and you go searching for answers only to find that there is a good chance that it’s the new blood flow or brain making new pathways or new cells forming from redirected blood flow that you have never had before because it was you were possibly even born with this and so it’s new parts of brain activating

My general doctor got right into stroke survivor stories first hand and other brain stuff that he agreed he seems to see more recoveries long term and the good and bad side effects than the Neuro guys do as he sees patients long term after surgery whereas often Neuro often only see them for a few follow ups and that’s it so he has more answers and experience than Neuro with long term follow up as he is passionate also about brain stuff. He doesn’t think for a minute he has anywhere near the knowledge or skill of surgeons or radiologists but he sees patients longer term and more often than nuero teams so has some more info on non life threatening post surgery symptoms

I guess I’m trying to say you can Google post surgery symptom expectations for almost any disorder but nothing really for avms besides VERY common or life threatening warning signs

It wouldn’t be a list of everything that can happen or what to expect as we are all so so different. But people could add a timeline of what they encountered in their individual recovery and things that got better and things that possibly developed or even changed or even got worse… (but was not life threatening, just uncomfortable)

It would be helpful for a lot I think to see it yes bob or Jill had no sensitivity to light pre surgery but does after.
Would not be giving medical advice and would have the red flags of if you have these…go in for a check asap!
but users here could write what they had post surgery or even a time line of no symptoms for blah amount of time then new ones as the Brain redevelops or repairs or adjusts…
A single thread people could look to as a fort point of call without trying to search every users individual posts in the hope of finding a needle in haystack and same symptom. I think it would be super helpful

It’s just everyone I speak to here or outside has often more questions after surgery than prior. New symptoms. And it’s probably normal but very worrying often

For example, my headaches and eye aches went away for 4 months post surgery then came back with a vengeance but there’s nothing wrong. Now I have new symptoms post surgery, super sensitivity to heat, sensitive to flickering or bright lights and night time where I legitimately feel like I am going to faint, extreme extreme fatigue and other very uncomfortable stuff I won’t bother to mention atm (which blood tests reveal nothing wrong and also I’m happy and non stressed in life so it’s related to brain), I had bending over issues post surgery where I could hear wind blowing and wanted to faint for 3 months post surgery but it went away etc etc. But other new stuff has occurred since

None of this was mentioned by doctors (as they don’t have enough info at this stage) and they say it’s not related to avm. But the stories I read here, it’s obvious it’s related to avm surgery and recovery… its not a coincidence. Maybe not a threat at all, but it’s related and people should know to be able to put their mind at ease

I just had an angiogram with all clear!!! Fantastic!! Happy as!! But I feel shocking with new symptoms and i cannot do what i used to do in life and new symptoms. Things have got a lot worse in some ways and that’s fine as long as I know it’s not life threatening which I do now after follow up angiogram. Im worse with symptoms 9 months on but happy to know it’s not a new avm.
It’s great to know I’m not about to drop dead! But prior to angiogram, I was worried. Now I can relax and say well these life changing symptoms are very uncomfortable but are not life threatening and possibly common? But I don’t know if common and there’s no info out there!

What are people’s thoughts?

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We’re all different - very different

So far, personally - I’m doing excellent. . . But, I still get weird spells - things that just stop me in my tracks - dizziness, I feel oddly light headed - the veins on the left side of my head just looks abnormal & huge - I get no headaches, but just odd head sensations, I have a completely abnormal sleep schedule & my wife hates it(I’m up at 3-3:30am every morning, no matter when I go to sleep) - so, now I’m in bed asleep by 8pm every night

No pressures, like mention - at least not internal. . . I turn beet red for absolutely no reason - yet, my BP is stable

Not to mention, all of these “symptoms” change on a regular basis

My neurosurgeons warned me of this - just like yours. Now, you have blood flow to your brain that never existed before - just about any feeling is now normal - yet, if you feel like you need to - you can always come back in for a follow up

That’s how different we are

Turning beet red or not - I’m back to benching over 300 pounds - already

After last year, I feel like I have way less figured out than I thought - over the last 12 months my whole world turned upside down & woke up in some health nightmare Twilight Zone episode

I am glad that you checked out solid - that’s awesome! . . . The rest seems to be on us to figure out on our own

Not to mention, I had a brain bleed(a part of a set of bleeds over my life time according to what the neuros think) - I get very odd sensations around the area when the last one happened. I try to tell this to my wife or anyone else - and, the only thing I get back is a blank stare

I’m just glad to hear we’re “ok” < what’s ok? Well, I suppose we’re all still trying to figure that out

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Exactly my point. I didn’t know your sleep pattern changed. I’m also in bed at 6 - 8 pm every night now and wake early regardless whereas it’s totally different to my old one but I certainly didn’t want to create a thread to ask “does anyone go to bed and wake earlier now”
But that helps me to know that you also do

I am 99% sure if I asked my Neuro team if I might start going to bed at 6pm, they would say no I don’t think so…

And like most people I’ve talked to here my Neuro team did not tell me any of the many possible after symptoms except major causes for concern and dismissed the other symptoms as nothing to do with avm. Ive utilised this site as my saviour for finding info

This is why a single thread would be great for people to see what others have and are experiencing

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My neurosurgeon is nothing short of a god send - almost a decade younger than I am & we come from very close backgrounds

He really go into it & broke “this” down to me - if it wasn’t for him, I’d be crawling off the walls for the first months post my embolization procedure

The best way to summarize what he told me is, there is no more normal that you were used to - now, you’re here - try your best to manage. . . . His exact words; you will feel things for a long time, that are far from what you have ever felt before < coming from him, this made me feel much more ok on the feelings/sensations I have been dealing with

But, yeah - my sleep schedule :face_with_raised_eyebrow:

My wife looks at me like I just came back from Mars or something. . .I feel wide awake & well at right about 3:30am - at first, I tried to fight it. Then, I decided to work with it. . . So, I’m deep asleep by 8pm - awake by 3-4am < and, I feel great

One thing I def learned from this - is no matter who you have & how close they are to you, no one will understand what’s going on inside of us. . . I was alone in ICU for over a week with only one five minute visit from her right before my procedure - it was very tough, we had to share rooms in the neuro ICU do to COVID. And - now, I don’t take any of it back. . . . I wasn’t too spiritual of a person before all of this. But, now - I feel like I was given exactly what I needed & when. . . My roommates were life changing to me - their stories, their struggles & so on

Again - very glad to hear you’re ok - well, a new ok. Lol

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Thanks brother :slight_smile:

I fight it at rarely but then feel even worse the next day so i dont fight it often lol

Glad you’re ok too :slight_smile:

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@AlwaysCurious I think its a great discussion I know for me - DAVF I still have mine and but my sleep has been off ever since I developed mine -Prior I could sleep anywhere and as soon as I put my head on the pillow but now sometimes I dont go to sleep at all or until 3 or 4 in the am. Also when I fly if I dont wear compression socks my legs swell. I also get a headache on the decent and the next day so far I have only flown 5 hrs is the farthest.
I have had two allergic reactions to meds and each time then I could hear my DAVF again .
Prior to my DAVF I had a rare massive stroke so my stroke dr was pretty upfront with me and told me that they dont really that much about the brain and even though my brain no longer show signs of the two strokes I still have pain from it . My thalamus got fried from my first stroke and its very common to get centralized pain syndrome from it but they didnt tell me for years.
I used to work in trading with lots of noise and since the DAVF I cant have a lot noise it really bothers me . Also my eyesight got worse
Angela

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Although not directly AVM related, my neurosurgical journey started back in the 90’s and things were still very much on a ‘Need-to-know’ basis and as one of the surgeons told me directly, ‘You’re just the patient… …You don’t need to know’. I have often thought that ‘…You don’t need to know’ line was more a case of “…WE don’t really know”. It wasn’t until about a month pre-COVID I had a neuro follow up when the dr told me ‘We don’t know a lot about how the brain works, we’re still learning. We don’t know why some patients come out the other side OK and yet others can have a catastrophic outcome. We just don’t know…’ FINALLY, FINALLY I had a dr’s admitting that this wasn’t just a figment of my imagination and the medicos do NOT have all of the answers, no matter how much many of them profess otherwise. Upon explaining my odd and ongoing symptoms I’ve even had neuros state “Well, that can’t be happening…”

There are a couple of analogies/theories I’ve used previously to try and help explain this, the first is science based:

“A common theory in science is A+B=C, but in neurology A+B=C is way too simple. More often than not for me its more a case of A+B-C/DxE√F… and everyone of them is variable, so trying to quantify each and it’s impact is near on impossible.”

The other theory is a comparison:

Your brain is like you body’s computer. If you opened your computer case and threw in a handful of aluminium foil flakes, what would happen? Your computer system would have short circuits all over the place and that’s if your computer system ever worked properly again. Neurosurgery can be similar, those super fine neurocircuitries have been disturbed and this can cause ‘short circuits’ giving us pain and sensations and often when we ask we get told “Well, that can’t be happening…”

I’m now 7years on from my last surgery, neurosurgery number 6, and still today I have some weird/odd/WTF pains/sensations/discomfort. Some of those have become my ‘new daily normal’, but even today I get new odd different pains/sensations/discomforts. I’m often questioning myself “Is that my head?” My wife (Who can be a little panicky at times) has had me off to the hospital a few times, only to be sent home. I now look for a progression of symptoms. A headache… that’s normal. Dizzies… that’s not unusual. Tingles on my right side… that’s a bit more concerning. But if that progresses to nausea and vomiting, it’s time to act and act fast.
Now, these are my signs, but each person is an individual and their signs and their triggers maybe different. As Mike_AZ states “Well, I suppose we’re all still trying to figure that out…”

Merl from the Modsupport Team

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@AlwaysCurious

I have been thinking about your situation for a couple of weeks. If you think a new topic on post-op symptoms could help, just create one. We could put it in the AVM101 category under the “survey questions” section.

I am not quite sure whether it will turn into something useful.

What I’ve been thinking about, triggered by your situation, is whether we should have a bit of a grouping of DAVF stories and whether that store of related stories could help future generations. I’m very keen on helping future AVMers, as you’ve seen from my thought-dumping when I’ve gone through similar stages to you. I’d say we’ve not had that many DAVFers before and even fewer embolization-only folk: it seems as rare as hen’s teeth in the US! However, if gathering together most of the DAVF experience could help, I can do that gathering and if I miss some, you can let me know where.

What do we think will work best?

Richard

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Yes, apparently a dAVF is even more rare than a “average” AVM < if there is such a thing as an average AVM

When I was at BMI, they said they see about a handful of dAVF’s per year or so

Geez, I feel special - at least so far, my situation has really worked out

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There are others who are much rarer. Pulmonary AVMs are very rare and we have (I think) two members with Wyburn Mason syndrome. That’s properly rare.

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I’m sorry to hear that. I have some similar things. Wait. Trading? Can I ask what kind. My ears have spiked:)

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Thanks Merl

See even that hekps me. What you said

I have no issues with my Neuro guys. They have been wonderful! I appreciate them all greatly

But it’s very hard when you’re told you’re prefect and all good like any other person… and then have them blank stare at you when have a symptom they obviously just don’t hear… They don’t visit this forum I guess lol

I’m now starting to realise although my situation is not as dire as some here and out there and I pray for you people.

Bu I’m starting to realise that something minor in the brain compared to someone else can be still be major. What I mean is I’m not a bad case. My case is good compared but I seem to have massive struggles with some stuff that “I shouldn’t”.

Some have massive strokes and recover perfect. Some have minor issues and do not recover sadly

Wanting to pass out from lights the other night so I left after a short time and went home. I felt light fainting from lights. Also only being able to go for a drive at night for about an hour before I’m totally exhausted and conplete head and eye pain and I used to ENJOY driving 10+ hours

Losing ability to swallow and going numb down my right side.

All concerning. But I just had my follow up angiogram and it’s all obliterated and perfect so not concerning at this stage

I don’t talk to drs often but the few times i have, they really do look like I’m making things up. But I’m not depressed or anxious. I’m happy. But things have changed and I don’t feel good at all

I just wish someone would say yes that can be normal. It’s hard accepting things are different after it’s “fixed” and I have no one else to compare to as it’s rare

Thanks for listening people

Thanks Dick. I’m not sure the best way to do it but I think it would help a lot of people :slight_smile:

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This is exactly how I felt.

What you’ve got going on sounds more concerning than what I had going on TBH but maybe time will sort you out.

One question you could ask the neurosurgeon (which I asked mine but he was very dismissive of) (he was dismissive of everything actually) is whether having fixed your DAVF, it has led on to some other thing going on. So, when they looked with an angiogram, did they only look at what they previously “fixed” or did they do a more general survey to check things nearby look ok, too?

Otherwise, best thing you can do is to try to ignore it and put it out of your mind as related to getting used to the new flows and that things will settle down over the next… I don’t know how long.

My doc did say that the brain is a very sensitive thing and could be upset by things that are so small, they just don’t show up. Doesn’t mean they’re not there but it does mean that if it’s so small you can’t even see it, there’s no way you’re going to be able to operate on it.

I’ll have a look at creating a DAVF area and populating it. Give me some time to do that and I’ll let you know when I think I’ve got a decent number of stories collected.

With you all the way,

Richard

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There are more - I been reading up on these ever since this happened to me

I wish I remembered the names of the one that I have previously found - but, the ones you mentioned I haven’t even heard of

I suppose you don’t want to be the rarest case - let alone everything else that can happen to our brain & body

When I was in ICU, things really got eye opening for me - the stuff I heard, shoot - I’m the luckiest one

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Me, too. It’s not to describe here but so long as you can find one or two others who you can say “well, thank goodness I’ve not got what he’s got going on” then I think we’re ok.

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One or two?!

Apparently BNI is the place for your brain probs - jaw dropping & heart stopping stuff

Then the staff - they work night & day - with true deep compassion that I did not think still existed in any part of the medical field, or any other for that matter

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Hey Always,
For many years (20+) I knew something was wrong. ‘No, no, no, there’s nothing wrong…’ says the Dr’s. So I ignored the signs. I spoke up a few times but nobody was listening. Heck, they locked me up in a psych ward because ‘…you just can’t be having pain like THAT…’ but I was. So, I ignored it all for a few more years until one day I’m driving down the road and my sight vanished. I went for a scan and the dr came out with ‘Ohh look what we found…’ as if it was all something new.

Then they operated and it’s been a rollercoaster trip ever since. I’ve lost count of how often I’ve been given that “All Fixed” speech. I was told ‘We operated, We fixed’, on the scans it all looked fine, but physically it was far from fine. I’ve often said ‘If this is ‘Fixed’, then I’m another word starting with ‘F’…’
I was given this expectation that it would be ‘All Fixed’, but rather than admit it wasn’t, it was put back on me. Like I choose to be in agony.

But I had a good 10yrs of ‘manageable’ symptoms and in that time I got myself a piece of paper (A qualification) and started teaching people with disabilities, never in my wildest thoughts would I have thought it would be me with a disability. Never. You could call it good fortune, you could call it serendipity, but those 10yrs gave me an education no textbook, no amount of study could ever provide. I can easily get what I call the ‘Poor Me’s’, but I worked with some people who had EVERY right to be down on themselves due to their predicament, but they weren’t, they managed around things. It gave me another perspective. Sure, things for me are not good, but I look back at some of them and think ‘What on earth have I got to complain about??? I could be in ‘their’ position’ (in some cases bedbound or wheelchair bound) and I’m not and I give myself a (metaphorical) kick in the pants. This gave me a good grounding for the eventual journey I ended up on. I’ve learnt to adjust and adjust (and adjust…)

This neuro journey is rare and I’m sorry to say but to find an exact match from your symptoms to your procedure to your outcome is near on impossible. There are people with similarities, sure, but I am yet to find anybody who has been on the exact same route/journey as I and I think that due to this having separate pages for each type of AVM splinters those rare similarities out even further.

Merl from the Modsupport Team

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Merl,

There is a bit of a risk there and I know we don’t want to create “micro communities” because that can reduce conversation rather than increase it. I just think organising the stories a bit can help find relevant ones. I’ve done it for the extremity, spinal and pelvic/uterine ones because there does seem to be some commonality of treatment (and the place is full of brain AVM folk, so it’s helpful for the non-brain-AVM people to be able to find relevant material).

I don’t think it’s a big risk and it can be undone easily in future if we (or others after me) find it isn’t helping.

When I’ve got some time, I’ll do a bit of organising. If it becomes unhelpful, I don’t mind undoing it

Merl, I’m hearing both both you & Dick

Do what you guys think is best for the community. I definitely didn’t want to create a micro community.

Just maybe a simple pinned topic of people’s symptoms or timeline after embolisation etc where people could look?

Was just an idea but unsure how it can be successfully done

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