More Surgery on the horizon

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This is Merl from the Modsupport Team. I’ve had a couple of members ask how my health is going and @DickD suggested I start a new topic.

As I’m sure others have seen over the years, I’ve been on a bit of a rollercoaster and although not AVM related it is neuro related. My last major neurosurgical procedure was in '13, that year I had 3 operations and although the procedures did deal with/manage a situation, each has left me that little bit further behind where I started from. I get some weird and wonderful symptoms every day, some I can ignore and carry on, some simply knock me off my feet. I use medication to manage it all and usually I can function, well, somewhat anyway.

Recently my normal symptoms have changed and increased, but still within the realm of manageable. I’ve been having annual MRI’s with nothing being noted. Recently had another scan and again the radiologist’s report was OK. I thought nothing of it. The images and report also get forwarded on to the treating Dr’s and surgeons. I had my annual neurosurgical follow up a few weeks later thinking it would be a case of “Nothing new. See you next year…” same as last time and the time before that. Only that’s not what he said. They saw something in the images.

“you’re not a ‘normal’ case…” he says “…you’re special…” I don’t like your kind of special, I want to be a plan old normal case. Simple/Easy that’s what I want. Then he says “And you need a craniotomy”

Well, you could have knocked me over with a feather. This was nowhere on my horizon. I have a VP shunt to drain the fluid from my skull and I thought “Worst case scenario could be a shunt revision”. That would be bad enough, but a full craniotomy OMG. Then the surgeon says to me “Yes or No?” and I told him I needed time. To which he agreed. 2weeks later and I get a phone call from his ofiice, wanting an answer. I’d done a lot of yes, no, yes, no… but one thing he said kept rattling through my mind “…if we leave it, it’s only going to get worse…” Worse? That’s not an option. So, I made the consult appointment for yesterday afternoon.

I’d previously told him that I wanted a couple of scans done prior and a shuntogram to see any changes in fluid flow post-op and he’s agreed to that. Here we have a system where the surgeons, neurologists and the surgical team all get together to discuss individual cases, then come to some sort of consensus on a course of action. When he came at me with the “Yes/No” question I thought he’d already had the team conference, seems he had not. This thing is growing deep in the brain, it may, in the consultation, be deemed too risky and if I’m REALLY honest, I’m actually hoping it is too risky because I don’t want another craniotomy. My recovery from the last one was a long arduous journey, I was a bit younger then, not sure I could do that again. He did however say it was my choice, but he couldn’t give any guarantees of success either. Tsk. But then, what sort of a choice do I really have??? Pain or even more pain :thinking: That’s not the sort of choice I want to be making.

So, again I wait. Let’s see what the ‘Team’ comes up with.

Merl from the Modsupport Team

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Hey Merl,

It’s good to hear from you, though clearly not the best reason for your post. You’ve been a bit quiet, I felt recently so you were in my thoughts yesterday and now you’ve started.

Do you know how long before the multidisciplinary team meeting?

It’s good to hear your story. I hope we can help you a little along the way, even if it is as simple as letting you think out loud.

Lots of love,

Richard

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Wow Merl, talk about a lob from left field and then the ok, yes or no? Hopefully the multidisciplinary meeting is soon, and a little smoother delivery on the procedure, options risk assessment etc…You have been s supportive of us all here. You so openly and graciously pass along advice guidance and frankly wisdom from a knowledge based perspective with all your experience.

I hope we are able to help some, and as DickD says thinking out loud or as a sounding board, I think I can speak for all of us in saying " fire away"! I am thinking of you, and take care, John.

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Hi Merl, Thanks for the update. I think it was a good idea to start a thread because you’ve probably got a whole rooting section. (I’m in that group.)
The prognosis of “worse” is pretty scary. And for purely selfish reasons I’d like to see you around for a long long time.
The craniotomy road is sure not an easy one but it’s, hopefully, got a finite/favorable end.
Be well my friend, Greg

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Shit! - pardon my language

I don’t have anything worth a crap to add - but, that’s crappy

This summer has been anything but a linear recovery for me - not to the point where I need anything similar. But, I just can’t keep up with the physical aspect of my work anymore

Hope for the best & try to follow through their advice - I suppose

How old r u anyway? I’m pretty sure you mentioned it somewhere, but I can’t recall.

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Thanks @DickD.
Yes, I have been quiet(er) of late. I’ve been trying to set things up for the wife so that if they, the medicos, said ‘It’s all happening tomorrow…’ things were in place. All of this %$#@ is happening to me, but the impacts on her are just as large. I can’t do much about me, that’s all up to the medicos from here, but there are things I can do to make it a little easier on her. I find it much easier to be concentrating on her than continually going over the same &$#% in my own head (No pun intended). A change of focus away from me is a good thing.

No. In fact, I didn’t even ask. I know how the system works (well, is ‘supposed’ to work anyway). In the past I have put a (metaphorical) bomb under their backsides to try and get them to act a bit quicker. They don’t like being pushed towards a response, in fact they can get a bit anti about me pushing. So, I just leave them to it this time.

Thanks @JD12

YES!! BIGTIME. I mean I knew further surgery was likely in the future (way, way in the future) but for it to be dropped on me the way it was, was a shocker. Now I need to go through their processes and see what comes of it all. I would LOVE for it to be a straight forward process, but that is just me being hopeful. It’s never been straight forward before, why would it be straight forward now? Tsk.

Well, that’s what I ‘try’ to do JD. Thankfully, not everybody has the need to go down the neurosurgical route. We have. The medicos can give us the ‘textbook’ theories and if it all happened as per that textbook, that’d be great, but often it doesn’t. It didn’t for me. Sure, others can give you the ‘Roses and Sunshine’ view of it all, but that has not been my reality, so I’ll share my lived experiences ‘Warts and All’.

Thanks @GregF

Ahhh, YEA, very scary. I don’t want further surgery, but I don’t want ‘worse’ either. I can be a bit of a control freak. I am in control of me, but here I have to hand that control over to the medicos and I HATE it. I’ve pushed back a little in demanding the scans be done prior and he has agreed, although he stated “I don’t think it will show anything different…” rather indignantly. I don’t want it for the images for ‘now’, I have recent MRI scans. I want it as a comparison for post surgery scans.

I wish I could agree but this will be 7th neurosurgery, each one has been to ‘fix’ an issue, but they can’t remove the cause as it’s all a bit close to brain structures I need. They can reduce the mass, just can’t remove it.

Thanks @mike_az_21

I can assure you Mike my language was much more profane :face_with_spiral_eyes: :astonished: :rofl:
In the appointment I was in shock, but we got to the carpark and I ‘Threw a wobbly’, nothing was sacred :astonished: :rofl: :astonished: :rofl: I was cursing the world and everything in it.

And you must listen to your body. I say that because I didn’t and tried to keep pushing on through. I tried to keep to the Dr’s timeline of 4-6weeks and back to work. The medicos all said I should have been OK, but I wasn’t. I returned to work, then collapsed at work. After that episode ‘She who must be obeyed’ (wifey) put her foot down and told me ‘You are NOT going back to work’ GGrrrrrrrrrrrrrrrr. I was not happy, but I reluctantly had to agree. I think workload is something we can only gauge for ourselves. In my former role, teaching people with disabilities, the physical aspect was minimal. But mentally you had to be alert, watching, ready to intervene in a heart beat. For example, in the kitchen, you have hot surfaces, you have sharp knives, you have hot water all of which have their own risks. Then you have an unpredictable person, a client, and …now manage it all… it was exhausting. Mentally draining. I needed the patience of a saint most days.

[

OMG There’s an echo in here :rofl: :rofl: :rofl: I have 3 women (one of them wifey) who keep telling me the exact same thing ‘Listen to the Dr’s’ Tsk :rofl:

Early 50’s (But some days it feels like late 70’s :astonished: )

Merl from the Modsupport Team

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Merl, this is certainly troubling news.
I have been away from the group for a a good while as I adjusted to some changes in life (career and location, nothing of your sort). It is unfortunate to return and immediately to see an acquaintance I have interacted with here. Shocking news certainly.
I certainly do not have more than what the others have said. But, I wish you the best on it and at least some calm in the time before you hear back from the multidiscipline meeting.
I would have felt indignant if a surgeon hit me with a yes/no, this I admit. Thankfully, my neurosurgeon is very calm and and tactful. I think she is aware I will respond negatively if she were to respond in such a way.
Once again, my best wishes to you, Merl.
Kev

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Thanks Kev.
I’ve found many medicos use that ‘matter-of-fact’, Black/White approach and my indignance has reared it’s ugly head before. I’m not good at being subtle. Slap me and I’m likely to punch back. The medicos don’t like that, mind you, I didn’t think much of their approach either. I understand that they need that emotional disconnection, but for us, the patients, we can’t disconnect from it all because it’s happening to us and is very real.

Thanks again
Merl from the Modsupport Team

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It’s very difficult for me to pull back on the throttle. My wife, is quite different - she has the attitude of “you’re fine” - I don’t like it, somewhat. But, at the same time I don’t want someone who’s jumping down my throat about anything I do.

It goes all the way back to when my hemorrhage happened. She just has it in her genes(I guess) - she just stays in denial until it’s officially too late - then she loses it

I don’t know exactly what to do just yet

Geez man, so so sorry to hear this news from you man - kinda the cloud we all have hanging over us - we just don’t know what will do what & when.

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Hey Mike,

I think finding that balance can be difficult for all involved. Initially, post surgery it was like walking on egg shells, just waiting for the next thing to break. And if “she” could see I was struggling they were ‘explosive’ eggshells and she’d tell me in no uncertain terms. I didn’t like that either. I know it was done in a caring manner, but yea that “…jumping down my throat about anything I do…” was an issue.

And that’s exactly how I’m ‘trying’ to look at it. I knew I was going to need further surgery at some point. I didn’t think it would be this major but, I knew. I was hoping it was years away, but now it’s my turn again. I’ve tried to find a willing volunteer to take my turn for me, but I haven’t found one yet :rofl:

Merl from the Modsupport Team

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Wishing you all the best Merl. Hopefully you’ll be here in years to come telling us ‘I remember when’ stories and get a sucessful result :slight_smile:

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I just have hope - that the “magical” copolymer holds - for(who knows how long)

I def have random symptoms, nothing severe. Just trying to roll with it - for now

Man, and you had decade in between. Darn human body

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There’s a lot of good thought going on here. I agree, any normal person acting as a surgeon probably has to disconnect emotionally: railing against that will make them emotionally involved and it’s their defence mechanism. I can understand them not liking that being taken apart.

I, too, am relying on a decent few mm³ of copolymer. I’m more comfortable than Mike about how mine is faring but I’m open to the fact that one day I might need more work and that could be more impactful than I’ve done to date.

And, learning on here about craniotomies and seeing success stories has encouraged me that I could probably get through a craniotomy better than I thought 7 years ago. However, you’re a different kettle of fish, Merl, aren’t you? I don’t understand where your naughty growth is exactly but it sounds kinda deep and kinda crucial in its location, so that sort of thing worries the :poop: out of any of us.

How are the neuros sounding about what they think they need to do? Are they sounding calm about it or “you’re a bit different than the average” about it? (I’m not sure it’s a fair question to ask: obviously I’m hoping for something very vanilla about it. Ok. Towards vanilla whatever that means) :roll_eyes:

I’m definitely sitting here, putting myself into your shoes. I’m not sure I can tell you what I’m thinking because I always want to be uplifting but we have to rationalize these life stages with ourselves, don’t we?

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Hey @DickD
As both you and @mike_az_21 are with copolymer, I am with the shunt and I’ve semi prepared myself for shunt surgery at some point. Not looking forward to it, but I’m aware. Now a craniotomy, that’s vastly more involved and was nowhere in my realm of thought at all. My last craniotomy was not nice. I would much rather NEVER go through all of that again. I’ve said to others ‘…if you can avoid a craniotomy, avoid it…’ and here I am having another. :roll_eyes:

Ahh yea, it is rather deep. Within the brain are the ventricles, which in layman terms are fluid cavities, They need to seperate the 2 hemispheres, going down to the wall of the 3rd ventricle to get to it. They really could not get much closer to the very centre of my brain. Many years ago, one surgeon I saw to get a 2nd opinion from said the best way to get to it would be to slice my forehead, peel my face down and go in via my nasal cavity :astonished: :face_with_spiral_eyes: I declined that solution. But, again in very basic terms, if you took a skewer and pushed it straight in my nose and another in my ear, where they meet is where they have to go to get it.

Well, initially, it seemed to me he was firm in his convictions. Now, he’s gone into ‘consult mode’. I thought he’d already done the consulting side to be coming at me with ‘Yes/No?’ questions. Seems he hadn’t, which I don’t mind because there could be a chance the others say ‘Too risky’. He did say ‘No guarantees it’ll fix, just manage’. So, is it worth the risk?? And I’ve been doing mental coin flips over that question ever since.(That’s about as vanilla as you’re going to get :rofl: )

“rationalize” ??? What? Me? be rational? I think I was, once :laughing: . I think it was about June 1994? :rofl: Before all of this started to show up :rofl: :laughing:

Merl from the Modsupport Team

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Shit. . . .

I can’t say I even have a clue of how it feels to getting a resect.

“Just” getting my embolization felt like straight hell - it felt like the right side of my face/head was on fire for months after.

Even now - my left upper quadrant just throbs.

But, I have seen quite a few folks in the neurological ICU who had a resect. It’s far from an easy sight. . . I’m just truly going one day at a time. Spending as much time as I can with my son. He’s only 11, but I feel that he’s the most understanding person of what I’m going through. He seen me completely seize out & get picked up by the ambulance.

The next day isn’t promised at all - and, I hear so many people say it. But, not many truly understand it.

I have no idea what’s going to happen long term & hearing something like this - another craniotomy, just f***

But, I suppose it’s quite similar for all serious medical conditions. I can’t see heart surgery being much lighter than this.

How are you feeling btw? Headaches, throbs, seizures, etc. New symptoms?

Thought I’d ask

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I’m often telling the wife “Tomorrow you could walk out your front door and get hit by a bus. Live for the NOW”

I have to agree. ‘AVM Survivors’ is part of the Ben’s Friends Rare Conditions network and along with AVM Survivors we have around 50 other communities. Many trying to manage some of those very same stresses. None of us know what’s going to happen long term, we just have to learn to ‘roll with the punches’ along the way. The good thing here is that there are others on a similar journey.

I’ve been ‘fairly’ lucky in that I haven’t had a seizure. Headaches for me are daily occurrence. It’s the intensity that varies and the flow on effects, some days I have issues with my eyes, some days my body temp regulation is a mess, some days I get these weird hemiplegic (one sided) tingles, like super, super intense pins’n’needles and some days I’ll get the whole lot all at once. Add that to the monster residing in my skull trying to bash his way out with a sledgehammer via my forehead. It’s not nice. I’m lucky I’m not in the bad stages 24/7, I know I could be and the surgeon said it will progress if nothing is done. The question is when? How long can it wait?

How am I? It’s manageable at this point. I have medication to assist and I try to manage ‘me’ around it.
My ‘normal’ symptoms can vary quite a bit normally. There has been a change in my symptoms of late but is that progression or is that my normal variability??? I don’t know and nor do the medicos. If I asked 4 dr’s I’m likely to get 4 different answers.

Merl from the Modsupport Team

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Again - shit

They say I’m lucky I don’t get headaches. But, the pushing from inside my skull is a fairly common occurrence + added blurriness to my vision in the right eye when the skull pushing gets worse. Along an uneven pressures in my head as the day goes on. . . I tell my wife, she looks at me if I were speaking Chinese.

The vein on my left temple is insane - it pulsates with my heart beat most of the time. It just trips out my son.

F*** man, just try hold yourself together - much easier said than done. I have no idea how I would - by “our” standards, so far I have gotten off easy

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Nor did I.
And I used to think exactly the same thing. Teaching people with disabilities, I worked with some of those ‘worst case scenarios’ and I remember thinking ‘I don’t think I could…;’ then not 6mths later and BOOM and here I am fighting similar battles. Now, please don’t get me wrong, I am NOT in the position of those ‘worst case scenarios’. Not at all, but I also know that I so easily could be.

I try not to look at it all as who has it easier or not. I think we all have our battles in life and, well, this is mine. I had someone recently telling me how lucky he was. Never been ill. Never broken a bone. Never been in hospital. I invited him around so I could break his leg, just to even things up a bit :rofl:
I’m not in agony all day, every day. Some people are. I have some management tools that ‘usually’ work for me. Some people don’t have those tools. Sure, in its bad stages I want to remove my eyeballs with a teaspoon, just to relieve the pressure. Intense. That pressure is NASTY. But it’s not a constant. I gotta be thankful for that.

You should come for a visit… …I can donate you one if you like :laughing: It’s free :rofl: No cost at all :laughing:

Merl from the Modsupport Team

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Oh man, this life business

Hope you do well man. . .

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Mike, I assume you’ve talked to the docs about this because to me it sounds like an increased intracranial pressure. Merl will know more than I do about this because sometimes a shunt can be placed to reduce pressure, though I don’t know if they can react to variable pressure (but that’s what it sounds like to me, having just read pages and pages of other people’s experience on here).

Richard

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