The journey starts again

I REALLY needed to read that tonight, more than you know.

Earlier today I had a neurosurgical appointment, thinking it was just a follow up.
They’d sent me for scans, so my plan was go to the appointment and get told “See you next year…”
Just like the last time and the time before that…
Only they didn’t say that, in fact they said the exact opposite. They want to do another craniotomy.

And the whole bottom dropped out of my world.
It hasn’t returned yet, I seem to be floating in a mental ‘no-man’s-land’. When the reality hits me (and it will) I’ll come crashing back into the shock of it all. I’ve been here before, I don’t want to do it all again. Not again.
And again, I lose that ‘control’ of me (that’s a bit I REALLY hate)
And then you come at me with ‘Respect’ %$#@&% :rofl: and ‘Respecting Self’ OHHH, %$#@&%… :rofl:
I was sitting here bashing myself up quite nicely until I saw that :rofl: :rofl: :rofl: :smirk:

Merl from the Modsupport Team

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Oh my. I just read about your appointment - what a dreadful shock that must have been. I’m so very sorry for you. Someone once made the comment to me of “I don’t know how you do it” referring to the mess of the last 2 1/2 years of my aneurysm journey. My reply was simply that it’s not as if I really have a choice. It’s just about putting one foot in front of the other and doing what you have to do to hopefully live to see another day, week, month, year, decade…

You have a lot to process right now, but just keep doing what we all do throughout this daunting process. Put one foot in front of the other, and keep moving forward.

You’ll be in my thoughts and prayers. You provide so much comfort to all the confused, fearful people that find their way to you on this site. I hope you too can find the same strength, hope, and support you bring to all of us as you move forward in this terribly difficult journey.

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Thanks Judi

I saw your post earlier, but was in no frame of mind to answer

And that’s exactly the point I’ve come to as well.

So, now out comes my practical side
If the medicos had any lesser option, they’d go there before going craniotomy. I have asked that they do a shuntogram prior to surgery to show where the fluid is going now. Then they’ve got some sort of baseline for fluid flow, then any follow up scans can be compared. I’ve just had an MRI a few days back, so they can use that if needed.

I’m also trying to put things in place for the wife. Make sure everything’s covered for her.

At the appointment the head neurosurgeon seemed to want an answer ‘Yes or No?’ and I told him straight out “You’re not going to get an answer today. It simply isn’t going to happen like that… This is not my first ‘rodeo’. I’ve been here before, I know what’s coming and I need time…” to which he agreed.

I must admit, the surgery itself doesn’t worry me too much. I’m asleep for that bit.
But the recovery…Hmmm. I’m not a nice patient (or so I’m told :smirk: ). My tongue can turn into a lethal weapon in a heartbeat and if someone pushes the wrong button I can be vicious. My filter vanishes and I have a hair trigger. NASTY. But the reality is the surgeon wouldn’t have suggested it if it wasn’t needed. I need ‘CALM’ which I’m not very good at. So, if anybody has any calm vibes send them this way :rofl:

So, I’m trying to move forward, but in a considered manner, taking everything (and everybody) into consideration. I would much rather just say “NO”, but longer term that’s not good either.

Merl from the Modsupport Team

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Well brother, all I can say is sap sucking son of a biscuit eater! I’m glad your doctor has allowed you time to process and prepare. Your insistent nature really shined on that. It made me smile with how much you love your wife, you always remember her. Am sending you as many calm vibes as I can, go hug your wife and you’ll feel them!

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Thanks Moltroub
P.S. My language was a little more colourful than that :rofl:

Merl from the Modsupport Team

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Recovery is the wild card, isn’t it? One thing I can guarantee you, your wife just wants you here, sharp tongue or not. She sounds like a trooper who is all in. I’m happy you have a staunch supporter in your corner. My husband was definitely a rock when my first flow diversion went awry and he had to fill in for my left side for a while. He had our house equipped with shower chair, grab bars, and all manner of aids so fast I don’t know it happened (I’m the shopper in our house) The only thing better was when he took them all down and and shoved them in the attic.

I can’t speak to craniotomies, I was all endovascular. But I can say my first was a bit of a nightmare I’d prefer not to relive. When they told me I needed another one (actually 2 now since then), panic mode set in. But guess what? 2 and 3 were downright easy. That’s my wish for you…I’m definitely not making light of this, but I hope that this goes textbook perfect, that your brain responds with a simple “been here done this, I can handle it” attitude, and your recovery is remarkably uneventful considering it is major surgery. Please keep us all posted. And for what it’s worth, I’m trying to send some calm vibes your way.

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Hey Judi,

Ohh yea, I HATE the recovery (And hate isn’t a strong enough word)
This will be my 7th neurosurgery, but it never gets any easier, no matter how many times people say “Ohh you’ll be right. You’ve been here before…”. They have no idea of the recovery.

Can I ask you about this ‘textbook’ you speak of :rofl: I think my brain needs to see it, it needs educating 'cos none of mine have been what could be described as ‘textbook’ :rofl: :astonished: :crazy_face: :worried: Each time they’ve gone in to fix an issue and yes, the issue has been dealt with, but each time it’s left me with side effects or lingering symptoms. And I’m sort of wondering ‘What ‘gifts’ are you going to give me this time?’ I mean it’s not going to give me anything useful like the ability to know the lottery numbers or anything like that, ohh no. It’ll be something I don’t need and certainly don’t want. Well, that’s how it usually works.

I am very fortunate in a way. My neuro experience has been multifaceted. My wife and I both worked in the disability sector. Teaching people of all abilities independant living skills. Basically all of the day-to-day stuff that most people take for granted ie cooking, shopping, budgeting, cleaning, social interaction, etc, etc. My wife’s side of the family (her twin sister and neice) have both required neurosurgery. Her twin passed away from brain cancer a few years ago and then my own journey. I told my wife, ‘you do realise if you sign that piece of paper (marriage licence) it’s a life sentence…’ and she STILL signed it :astonished: :rofl: So, it’s not like I starting from zero, I have knowledge to draw from and then I have all of the other members here.

Merl from the Modsupport Team

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Merl,

7th surgery? SEVEN?! @#$%!!! (insert any or all expletives of choice here).

I’ve already read enough of your posts to know things have been challenging (I know, huge understatement), but it sounds like you’re trying for a world record that no one wants. In fact, I think you need to WRITE the next neurosurgery textbook. I’m thinking “What You’ll Never Learn In Neurosurgery School, One Patient’s View from the Gurney to the ICU and Beyond”. It should be required reading.

Honestly, we all do the “why me” from time to time throughout our lives. You are beyond justified in throwing that question out to the powers that be in the universe. As we all know, answers to those questions are elusive.

I’m glad of your background that has allowed you all manners of coping mechanisms, but so sorry you have to constantly rely on them. If you don’t mind sharing your timeline as it unravels, I’ll be marking my calendar (dates and times are no longer my strongpoints). I know that unless someone else can take your place on the operating table it’s of little help, but I will be invisibly wishing and willing you well, and praying for you and your wife throughout this next segment of your journey. Basically whatever good will I can send your way, I’ll try.

Remember all those people telling you that you’ve done this before have no idea what to say to you. Thet don’t know how to help, or how you feel. No one really does. They’re just trying to compartmentalize it for themselves because at the end of the day, we all know at any time any one of us can have the rug pulled out from under our feet. Minimizing it is coping with it. But the patient never gets to minimize it. We’re stuck plodding along wishing we could either shift into reverse, or fast forward to the credits. Knowing the only way out is through it can be the hardest part.

Judi

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Thanks Judi.

The “Why Me’s?” I’m well past those now. Initially, for the first couple, yep, I fell deep into that ‘Why Me?’ hole. But now it’s more “Ohh s$%^, here we go again…”
The expletives, Ohhh, they come really easy and there has been many.
I must have been a real bad bastard in a former life to get this lot. :astonished: :rofl:

I can remember years ago telling my then girlfriend (now wife) I could never do her job, working with people with disabilities. That was outside my realm.
At the time I was a youth worker, that was challenging enough, but disability was beyond that. I volunteered on a few projects over the years (more or less to help my GF out). A few years passed and her boss came to me offering me a position. I took it. I was in that role for 10yrs.

As it turned out it’s all been rather serendipitous, many of the skills I used for clients I now use for myself. And although I was the teacher, those clients taught me so much about adaptation and determination. So it worked both ways, even if I didn’t know it at the time. And as bad as things are for me, they could be worse, much worse. I know it, I’ve worked with people in much worse situations than mine, so it gives me some perspective. Personally, if I didn’t have ‘some perspective’ I’d be unable to function, because it can all overwhelm so easily. Ben’s Friends also gives me some perspective too. Just in having others saying “Yea, me too”, It’s like “phew, so I’m not alone…” Others do understand and aren’t just handing out platitudes.

Merl from the Modsupport Team

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@ModSupport
Dear Merl
What a nightmare to go through this again! I have tried to find words to write to you but I don’t know what to say other than it really sucks! No matter what life throws at us we have to put one foot in front of the other and we can’t give up.
I’m thinking of you and your family and hope everything goes well.

I second this suggestion, I would like to get a signed copy from a fellow survivor the day your book is published. Did you know that you can self- publish your book at www.blurb.com ?
Now you have a new goal in life to accomplish :heart_hands:
I am cheering for you on the sidelines.
All the best to you and your family.
Lena

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Hey Lena,
Don’t worry about the words, I have LOTS of them, none of which should be used here :rofl:
The reality is as Judi stated “…it’s not as if I really have a choice.” If I can keep my mind occupied I’ll get to the day (which is still to be set by the surgeon) alright. I’ve done it before; I can do it again. But the aftermath… …my recoveries have never been ‘normal’. So gauging that now is impossible.
I know it’s coming, now it’s just the wait (and weight).

I like that idea of a goal. I need one, and that could work. Thanks to you both for that idea.

Merl from the Modsupport Team

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Holy moly batman - I cannot even imagine what you’ve been through x7. I’m sending positive thoughts and will even throw in a prayer or two.
Lynn

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@ModSupport @Judi
I’m a retired nurse and certified nurse midwife with my education and experience from overseas. Based on my experience a book like this would be very helpful for the students and healthcare professionals. VERY HELPFUL !
When I was young I started out at a surgical unit, at the university hospital a unit mostly for gastroentological surgeries. We sometimes had so called “case studies “ with our senior physician where the diagnosis and treatment were discussed as an extra education in a “ grand round”. It happened sometimes that a former patient was invited to share his or her experience. It all boils down to the “how can we give the best care for our patients “
Yes :raised_hands:t2: start writing that book!
Let us know when it’s available! As I mentioned earlier I would like to get a signed copy.
:heart_hands:

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Merl;
So sorry to hear your news but on the other side it was found! I’m 7 years out with 5 PEDs in my head for my 2 aneurysms and I worry about that happening now and then. I try to just remember I’m still here. Able to see my 1st grandchild who’s 10 months old and I thank the Big Guy all the time. I hope all goes well and you’ll be in my prayers.

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Thanks Mimi

Merl from the Modsupport Team

Well, I told the surgeon last week 'I need time" and today I get a phone call from his office wanting me to make another appointment :astonished: So it seems the ‘ball is on the roll’ already. Not my plan, but anyway, it’s got to happen. Next surgeon’s appointment is for the middle of next month.

Merl from the Modsupport Team

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Thanks for the update Merl! Remember to breathe, focus on your “std” (stuff to do) list and you might consider getting your barber to trim a neat design - maybe the galaxy, something more interesting than my friend’s grandson just did which are just lightening bolts, though he also dyed his short blond hair blue and purple…

Sending calming vibes your way.

My surgery was 6 months ago is anyone having problems with their equilibrium? Mine comes and goes never know when it’s going to happen I have a CT scan scheduled for next week just wondering if anyone else has these symptoms.

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Hey Moltroub,
Okay, I took your advice I took a deep breath in…

My great niece is into doing weird and wonderful things with her hair. Last time I saw her she had a glittery rainbow happening, before that she’d buzz cut one whole side, the other side was 1/2 way down her back. I just think “…I wish I could grow hair like that…” :laughing: It’s taken me 10yrs to get it this long and I’m about to lose it all.

I was thinking of getting a tattoo “Cut Along The Line--------------------------------” :rofl: :astonished: or 'No Entry. Trespassers will be Shot" :rofl: I know a bloke who’s, like his father, gone bald on top and has a tattoo of someone pushing a lawn mower on his scalp. It was right on his hairline when he got it, but the hair has retreated further. Scalp tattoos can be rather painful because it’s right onto bone, also my scars damn near make a noughts’n’crosses board(#) and the scars don’t take the tattoo ink like normal tissue, so finding a spot to write it our might be an issue. :crazy_face:

After the conversation today, I’ve made the first step and now I go with the flow. I’m trying to make light of it so I don’t bring everyone else down ie Just chop it off at the neck. That’ll fix it all :laughing: :crazy_face: :rofl: :astonished:
Problem solved.

…can I breathe out yet? :laughing:

Merl from the Modsupport Team

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