3 weeks post embolization and having some issues

[ChrisG]

Hi everyone, first time poster here and new member to the AVM family unfortunately. I was diagnosed with a right temporal lobe AVM by way of my having to seek a private MRI as the doctors completely missed my symptoms. I had been experiencing for about 15 years what had been told was panic attacks, finally explained by my neurosurgeon as focal seizures. This was a relief in its own right by finally proving an answer to what had been baffling me for so long.

What led me to get the MRI was that I was being pigeon holed as being depressed/anxiety (suggested bipolar due to my ups and downs and family history). My seizures (panic attacks before I knew what it really was) would come at the same time as my mood being down. I thought of it as a chicken or the egg; which was causing what, the mood down cause I was experiencing seizures, or seizures being caused by my down mood (depressed state). I showed up to my local hospital with simultaneous freezing cold and non stop profuse sweating, which had me put on stress leave from work as well as being quite manic. The hospital put me in the pshyc ward after days of neglect in the waiting area. I got myself out of there the next morning on time to make my MRI appointment. I ordered the MRI as I thought there must be something wrong with my hypothalamus, sending wrong signals to my thyroid. This MRI caught the “incidental finding” AVM and was sent to my doctor suggesting I be referred to a neurosurgeon. Unfortunately I did not get the MRI findings report until the day after I experienced a wicked headache, worst I ever experienced, while in the middle of a vigorous cardio workout. I received the MRI report two days later and upon reading it understood what that headache was (thunderclap). I went to another hospital the day after getting this report due again to inability to sleep with my non stop drenching sweat. With the MRI report in hand, this hospital ran a CT scan which showed I had hemorrhaged. What a coincidence that I hemorrhage a few days after getting my own private MRI due to knowing something was wrong in my head.

I was transferreds to a specialist hospital a few days later and waited a few days again for my embolization procedure. The profuse sweating “turned off” with this procedure and haven’t had a “panic attack” (seizure) since. I do however still have constant headache, sharp behind my right eye and dull ache into the back of my skull and temple. My heart rate is also a good 20 to 25 bpm faster than my normal resting heart rate of 55 bpm. I have been an avid cardio buff trying to stave off Father Time so this higher heart rate has me concerned and anxious.

Does anyone have any experience with long lasting headache after embolization and with increased heart rate? Any info would be appreciated as I am hoping to hear that it is normal and will sort themselves out. I have another embolization procedure slated for two months from now and then likely radiation to eradicate it entirely. I don’t want to spend the rest of my life looking over my shoulder waiting for the AVM symptoms to reappear

Thanks all.

[DickD]

@ChrisG

Welcome to AVMsurvivors! It’s great that you found us, though disappointing as always that you needed to!

I don’t know much about elevated heart rate, so I’ll let others share their experience but how soon post op are you? I can tell you that I had an embolisation too and I felt very weird for quite some time post op. Whether my BP / heart rate was unusually up, I don’t know, but I was noticeably weird, on and off for six months and I didn’t feel “normal” for 18-24 months. That you’re waiting further treatment could affect things, I guess, too. You’re in an unusual situation.

Really good to have you on board.

Best wishes,

Richard

[ChrisG]

Thank so much for the reply and warm welcome Richard. Sorry, I didn’t mention I was 23 days post op and was out the door and home the fillowing day. I feel more and more emotional each day as I see things around me that remind me of my life prior to this happening.

Regarding the heart rate, I think my AVM has blessed me with OCD as I am fixated on my heart rate and obsessive about exercise. This may of course of helped my AVM expand. I feel that I can sense my heart rate faster and it is making me anxious and emotional. I just hope to return to my normal self and back to the exercise that keeps my mood elevated.

Hope you are doing well Richard.

[DickD]

I can tell you, I’m just over 6 years post embolisation and I feel very fortunate to say as far as I’m concerned, I’m back to “normal” (and have been for several years now).

23 days post op is nothing in the nicest possible way. Everything is still very upset from the foreign material you’ve been subjected to. I’d definitely mention your heart rate to the doc but I think it is very easy to be hypersensitive to what you can hear. My AVM was classed as a dural arteriovenous fistula and was squirting blood into my transverse sinus (and past my ears) so I could hear my AVM.

After I had my op, the noise of the AVM was gone but I was immediately conscious of an even louder pulse. A perfectly normal sounding pulse but nonetheless it took me by surprise, I worried about it and it seemed rather noisy. To a great extent, I feel we listen for the sounds in our heads rather a lot in these circumstances and I’m not sure it helps.

If you’re only part embolised, who knows what shortcut from artery to vein and straight back to your heart you’ve got still going on. I’m not sure you should expect to feel anywhere near normal before your next embolisation. What’s the plan?

I had just the one shot and a follow up angiogram at about 7 or 8 weeks to verify that it was all glued 100% in that first go. It was. But honestly, it was a rocky road for the next 18 months as everything settled down and I eventually moved on.

Good luck! I hope others will share some thoughts / experience with you as well.

Best wishes,

Richard

[ChrisG]

The plan I was told the one day post op was the that it was 90% glued and to finish the rest two months from now. He indicated that would be to shrink the AVM in order to radiate. I am open to whatever will eradicate this forever.

[DickD]

So very much like my potential two shots, though my doc said immediately after no 1 “I think I got it 100%. I used a lot of glue!” (Nice, eh!)

I had my embolisation at the beginning of April 2017. I drove my mum 100 miles for a concert in the August and felt like I’d overdone it (and 100 back). I had a further dizzy spell in about October (dizziness had been one of my symptoms) and went back to the doc to say “I think something is not right.”

It took a further year for me to go through more scans, appointments etc before the answer given was basically “No fault found; just get used to the new plumbing.” It takes a while to get used to.

I’d say you’re doing nicely but do mention your heart rate to the doc to see if it accelerates anything they want to do.

Best wishes,

Richard

@DickD

how soon post op are you?

Just saw the title of this thread!
Everyone must think I’m crazy

[ChrisG]

not at all Richard; I think my use of the word issues was a distraction My surgeon, in saying he got 90% of it, said he didn’t want to be too aggressive; probably for the best. I guess I am expecting too much too soon as there was someone poking around in my brain. I must say, I would rather have the diagnosis I was given (AVM found) than the random “panic attacks” which had me baffled for years and in search of what was wrong with me. I knew it was not a chemical imbalance easily fixed by pills.

Regards,
Chris

[DickD]

It’s definitely a good thing to get the right diagnosis but we all know how such a diagnosis can rock your world.

Recovery is unreasonably slow. However, I found embolisation a perfectly gettable-throughable thing. I was actually rather relieved to get out the other side and feel rough but like I knew I could do it again if I needed.

You’ll get there!

[ModSupport]

Hey Chris,
Firstly, Welcome to Ben’s Friends.
Second, I have to agree with everything Richard has written. 23 days is very early in your recovery, the medicos often give a 6-8 week timeline for many post op recoveries. But as I have said to others that timeline is often the healing of bone/scalp, the changes in the brain itself can take much longer to ‘normalize’ (as if any of this is normal).

I too had been pigeonholed/ misdirected/misdiagnosed and psych became the default answer. I was put on meds of every type and description uppers and downers and stuff that just messes with the mind. So I shut up about it all, didn’t tell anybody about the oddball sensations. So, I’m driving down the road one day and the lights went out. I couldn’t see. Had a scan and dr comes out with the line ‘Ohh, look what we found…’. They found something growing in there (not an AVM), but a mass. The mass is directly under my hypothalamus, putting pressure on all of the surrounding structures, sending my system haywire. The flow on effects have been endless.

This all sent me into a state of hypervigilance. And post surgery, Every ache, every pain and I’m thinking ‘Is this it??’ Over time I’ve learnt what is MY ‘normal’. I get some weird and wicked symptoms. I haven’t had a headache/symptom free day for years. I now look for a progression in symptoms, like I say ‘a headache, that’s normal’ for me. But if that starts progressing to tingling in my hands and feet, that’s a bit more concerning. If it progresses to nausea/vomitting I need medical intervention. Now, these are my signs and over time you too will learn your signs. I think the best advice is similar to an English world war 2 poster/motto “Be Aware, Not Alarmed”. Be aware of your pain symptoms and what’s ‘normal’ and don’t be too alarmed if it’s a little ‘not normal’. But if it progresses…ACT.

I sort of have a bunch of question I ask myself:
Is this ‘normal’? Obviously not Or I wouldn’t be asking the question to myself
How far from ‘normal’ is it? I’ve had a sudden icepick headache that dropped me to my knees, that was an obvious sign of ACT NOW, but I often get lingering headaches. Bad, but semi-manageable.
Is it progressing? Are my symptoms ramping up
Have I eaten/missed a meal?
Have I medicated?
Have I over exerted myself, triggered my symptoms myself?
Is it environmental? Am I too hot/cold? Is the sunlight too bright?
etc
etc…

Often I can run through these questions and find my own answers but if not, hmmm, I’ve got me an issue.

The reality is the blood flow within your brain has been altered and that can take some time for your system to adjust to. It takes time and nobody can give you an exact measure of time and it isn’t always a straight line of progression. There will be good days, bad days and those days you wouldn’t wish on your worst enemy, but we learn to manage and you will too.

We’re always here if you need.

Merl from the Modsupport Team

[Lucy]

Hi Chris!
I have had 5 embolizations so far (the first was in November 2021 and the last in March 2023). My AVM is located in the left occipital lobe and I’m having an angiogram in May to see if it has been (finally) obliterated. I cannot help you with your question about heart rate. However, I experienced headaches for quite some time after the embolizations (not all embolizations were the same nor the symptoms afterwards) and was taking painkillers. Don’t worry too much, 3 weeks after embo is not such a big period of time, as the others have already said. About the pain in your scalp that you mention, about two and a half/three weeks after my first and last embo I started having pain in the back of my scalp and some days later I started having hair loss (it grew back again after the first embo, now it’s too soon after the last embo but I don’t worry about it). Doc said that it’s due to the radiation used during the embo. I am wishing you all the best!

[ChrisG]

Thanks so much Merl for the reply and and giving me some tools to move forward in handling this. I do feel selfish in asking the questions as I do know I am not long into my recovery and am lucky what my hemorrhage left me with compared to some of the bad luck others have been dealt. I guess it is that I have feared the “back nine” of my life for some time which is why I became obsessive about my weight and health. I have been lucky in life to not ever face any serious health issues (other than 15 years of going down the depression road). This AVM popping into my life has caught me by surprise and I don’t know what part of my depression/anxiety is real or just from my brain sorting itself out.

Thanks again to everyone for the wealth of information and in sharing your stories.

Chris

[ChrisG]

Thanks Lucy. You certainly are well versed at what to expect after embolization after nearly a half dozen Not sure if my heart rate is physical in nature, in that the blood is flowing through my body differently than usual; or if it is just anxiety and barely being able to recognize my life over the past 2 months. I am going back to work tomorrow for the first time sine the beginning of March and am nervous about it, despite having worked there for 24 years. I spend my day on the phone (at a standing desk) and I guess I worry that my personality has been affected and no longer able to work to my typical standards. Will have to see about getting a chair and skip the standing desk for a while. Thanks again for the info Lucy; stay well.

[DickD]

@ChrisG

I do feel selfish in asking he questions as I do know I am not long into my recovery

Chris,

Don’t. This forum isn’t like anything in the rest of life. This is exactly a place to come when you’ve got questions and because we’ve been through the same stuff, you’re among good friends.

It’s a massive knock to anyone’s confidence, so just know that and be here as much as you want / need / like. It’s what we are here for. We’ve been there.

Very best wishes,

Richard

[Lucy]

Dear Chris, it’s totally fine if you are not able to work to your typical standards yet. To be honest, I haven’t managed that since the whole “journey” started. Don’t pressure yourself, you need time to heal in all aspects, emotioally included. I’m sending you a post I have read in the avmsurvivors that has been really helpful to me when things got bad. I’m wishing you all the best on your first day at work. Be kind to yourself and things will get better, you’ll see.

your wounded brain.odt (26 KB)

[ChrisG]

Thanks Lucy, emotional is definately a way to describe me lately. I appreciate your kindness.

[ModSupport]

Hey Chris,
Never, EVER feel guilty, embarrassed nor selfish for asking questions. NEVER. I think that when the medicos point at psych, we often question ourselves. But I have found that when the only input is from self, I keep rolling the same questions over and over and come up with the same answers, over and over. My mind turned to moosh. I needed external input and who better to ask than people who have been there? People like us. None of us ever ‘plan’ to be in this position, but here we are.

Anxiety and depression can have physical aspects and for a long time I correlated my physical symptoms as a mental side effect… then they found the cause and OMG I was so very angry. All those years of being told I was ‘crazier than a box of frogs’, to then be told there ‘maybe’ a reason for all of these oddball symptoms. It made me want to go back and confront all of those so called ‘Medical Professionals’. When I did confront one dr about it all the response was ‘Well, don’t blame me…’ GRrrrrr

In all honesty I do not think there is a clear line between anxiety and brain issues. It’s a bit like that old question: What came first, the chicken or the egg? Does the anxiety feed my symptoms or do my symptoms feed the anxiety? And if you ever come up with a definitive answer to that one, please tell me. The closest I came to an ‘answer’ was that they feed each other ie my symptoms make me anxious, and my anxiety feeds my symptoms and around I go again…

I must also agree with @Lucy

@Lucy

Don’t pressure yourself, you need time to heal in all aspects, emotionally included.

I say this because I didn’t. I pushed myself to get back to work, to get back to the life I knew. But I pushed too hard, too soon, doing myself am even greater injury, resulting in me ending up back on the operating table, requiring further neurosurgery. Don’t do that. As I often tell others ‘Take the time your body needs and not just the time your mind expects’. I’ve required a few neurosurgeries and the last major one was in 2013 and I haven’t been able to return to former profession since. I kick myself every day for that ie maybe if I hadn’t pushed myself so hard, I’d have recovered better. I had what I call the caveman mentality “I man, I strong, I can push through anything”, only I couldn’t and that REALLY bashed my ego mentally.

Merl from the Modsupport Team

[ChrisG]

Sorry to hear of your setbacks Merl; I hope things are going better for you now. You and I sound very much alike in that I tend to push myself too far as well; but I have to make sure to head your advice as this time it is for real; being my brain and not other body ailments I have pushed myself too far over in the past. I too have been using the chicken or the egg reference regarding my depression and “panic attacks” as they would both be at their worst at the same time and I didn’t know which one was causing the other. Like you, I had been told so many times it was a psych issue and became to accept it. I even presented myself to my doctor post surgery for my AVM hemorrhage only to have her ask me if I still wanted to be referred to this new psychiatrist. She still didn’t want to accept my brain lesion was indeed the root cause of my problems. The oversight by my doctor made me have to take issues into my own hands with an expensive MRI (after an expensive ultrasound of my thyroid turned up nothing).

The sad part is that is will be easier for me to face my colleagues at work with a physical ailment story rather than what had me put on stress leave the beginning of March. It was considered a manic episode (nervous breakdown) and I have been around long enough to know that mental health is still not widely accepted as valid by everyone. I was the only one in my orbit that recognized the physical manifestations was not the cause, but instead a symptom of something ominous. Appears from what I read about right temporal lobe AVMs is that I may get to blame everything that has been wrong with me on that alone.

Thanks once again for the valuable information.

[ModSupport]

Hey Chris,

@ChrisG

Sorry to hear of your setbacks Merl

Thanks Chris, we all have our challenges and these are mine.

@ChrisG

You and I sound very much alike…

And when you mentioned the hypothalamus and your other symptoms I thought something very similar. I had a similar thought regarding your Dr wanting you to see a new psych. The psych diagnosis has already been made, they will forever-and-a-day refer back to that diagnosis. “Ohh, but you have a history of…(insert diagnosis). It must just be that…”. They don’t have to investigate anything else, even better if they can go ‘Here, take a tablet, that’ll help…’ then they’ve diagnosed AND treated. Sorry, I can be a little cynical when it comes to dismissive dr’s. I’ve had some real challenges with Dr’s, so I try to keep a track of it all myself now. I know ‘Me’, I know what’s ‘Normal’ for me. I try to avoid the dr’s unless I have a need.

Now, in saying that I avoid, I do want to say that sometimes talking to a psych can be of assistance. I tried to ignore the mental side. I had enough drama trying to deal with the physical side effects. So I ‘tried’ to ignore it all. Bad idea. I’d set myself these goals and I wasn’t reaching them. I wanted to be back at work, but the more I pushed the more my body pushed back. I had to accept that returning to my former role was not going to happen and that was a VERY bitter pill to swallow. I couldn’t do it on my own, I needed to talk to someone. I saw a psych. She helped me work through some of it. My only wish is that I’d done so earlier, it would have made my recovery a bit easier. It certainly helped lessen my mental load.

I do agree, in regard to the acceptance of a physical issue. It also makes it ‘somewhat’ easier for us to accept in ourselves too. Even having worked in the care industry, mental health still has a stigma. Scans weren’t easily available back when my issues started, it was easier to label it all a psychological issue and ‘growing pains’, so no further investigation was taken. I’d been telling them and telling them. I gave up. Add 15yrs and the symptoms all got too much and I started pushing back. “Somethings not right…” My PCP reluctantly sent me for a scan (just to shut me up I think) "Ohh, look what we found…’ And my neurosurgical journey started from there.

Merl from the Modsupport Team

@ChrisG

I may get to blame everything that has been wrong with me on that alone.

P.S. I do, Especially when the wife wants me to take the dog for a walk ‘I feel a headache…’
Or She says ‘Remember when you said…’ ‘Nope, I don’t remember nothing’ Bad memory

[DickD]

@ChrisG

The sad part is that is will be easier for me to face my colleagues at work with a physical ailment story rather than what had me put on stress leave the beginning of March.

Chris,

Couple of thoughts from me. Ok, three.

1. You’re doing really well. Ok?

2. Blaming it all on the AVM sounds like a perfectly good plan!

3. Warning, a brain AVM is a hidden condition. What you’ll get, quite likely at some point, is “but you look fine!” There is trouble with illnesses or conditions that aren’t as screamingly obvious as a broken leg. People who have been broadly well all their lives don’t relate brilliantly to any hidden condition.

So I think it really helps to be able to say to people “They’ve found this AVM thingy that is affecting my temporal lobe and I’ve had an operation (1 of 3) to sort me out but it’s going to be quite a long journey.”

Your real friends will be the ones who take an interest throughout, though even some of the good ones will forget you’re not 100% because you “look ok”.

If it were me, I think I’d be the same as you: I mean, it’s good to know there’s an underlying physical reason for some of this stuff, isn’t it? Because you can think you might be going a bit

I could hear my AVM because it was gushing blood past my ears. I think my moment of “I’m not crazy; it is real” was when I pressed the microphone of my mobile phone to the spot on the back of my head and recorded the actual whoosh sound from the outside. Getting an MRI or angiogram scan that shows something “real” is the same. There’s something unusual going on and that’s why you’ve been going through the mill.

There is more mill to be gone through yet but hey, this is why we’re here.

Best wishes,

Richard

[ChrisG]

I am cynical about the diagnosis stage of our medical health system here in Canada but once on the conveyer belt, our system does seem to work ok. I am now under the excellent care of a very good neurosurgeon; just took some time to get into the care part of the system as diagnosis stage was a doozy. Psychiatrists only seem to be interested in throwing a handful of pills at you which I am not interested in; pretty sure Prozac was the final straw that kicked me headlong into mania and ultimately hemorrhage. My lead up to final diagnosis does sound near identical to yours, although mine cost me $1600 out of pocket for the two scans.

Despite my cynicism, I do believe in psychology and often refer to myself as an “amateur psyhjcologist)” due to the years of research I have done tracking down my mental health symptoms. I will be looking for a good psychologist to spend time with and talk it through because I know I am in need of it.

PS. I am also using my weakened state with my wife but I think it is beginning to get a bit old and going back to work may just be the end of that excuse around here