So where in the heck has this TJ guy been?

Support
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I really really wish I was making this up.

I really really don’t have the time, energy and emotional strength to answer too many questions, but I will try.

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Early in February my daughter called my wife at work because I wasn’t making any sense at home. Wife left work, came home, brought me to the hospital. I didn’t remember any of that, or any of the next couple of weeks. I was not making any sense - delirium, confusion, you name it. Apparently ran tests, no bleeding, no AVM ruptures and no strokes. PTL. As best as they could figure out, it was a disequilibrium of the cerebral spinal fluid. Removed some, got a lot better. By the 29th day, I was probably 80-85% back to where I was. Discharged and came home and a week from this coming Monday doing an angiogram to take a closer look at the blood vessels. Doc expects to put in a shunt from spinal column to abdomen to remove pressure and I “should” be all set.

It is really weird and tough coming back home after 4 weeks and trying to fit back into home routines, figure out where things are, just get my bearings. That’s where we’re at right now.

I expect we will have a lot of ups and downs over the next period of time, but the way I look at it, I’m alive, talking, eating, kissing my wife, it could be a whole lot worse.

I don’t expect to be spending a LOT of time on here because if I do, I get the “cruise ship Wobblies” which don’t feel good. I will keep in touch as best as I can. Every single one of you is a rock star. Don’t ever forget that.

Repeat after me, “I am a ROCK STAR!”

That picture is the alumni shirt that the rehab hospital gave me when I graduated from there and went home. It is hanging on the wall in my house - an important shirt.

Cheers…

TJ

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Ohh hell, that’s not good TJ.
“…a disequilibrium of the cerebral spinal fluid…” I’ve never heard it called that before, the name they call it here is hydrocephalus or ‘Water on the brain’. In very basic terms, there needs to be a balance of Cerebral Spinal Fluid (CSF), brain matter and blood within the skull. When one of them is out of balance… …ohh WOW… the symptoms can be chronic. The body produces around 600ml of CSF daily, if it’s not used by the brain or spinal cord and cannot escape, the pressure can build and build. If not managed it can deteriorate and in severe cases cause a patient to go into a coma. I’ve been on that rollercoaster a few times, the increased pressure can do some weird things.

I say all of this because I have a shunt. Mine’s a VP shunt or a ventricular peritoneal shunt, running from the ventricles in the brain to the peritoneal cavity (basically the intestinal cavity). You mention a spinal shunt which I believe is also known as a lumber shunt. I have a CSF blockage at the top of the aqueduct, where the fluid leaves the skull, so a lumber shunt would not have worked in my case. I would certainly suggest less interaction/surgery on the brain itself would be a HUGE plus but any such surgery is bound to have it’s own recovery symptoms. But then you know all of this, you’ve been here before. But it never gets easier. My only advice: Recovery takes as long as it takes, so be kind to yourself.

I think you are taking an excellent approach in the view of “I expect we will have a lot of ups and downs over the next period of time…” and if you are prepared for that, in my opinion, you’re 1/2 way there already TJ. The acceptance of it all… WOW …that takes some insight and you’re saying we are rock stars?? Have a look in the mirror Sir.

Please let us know how things are going when you can. Our thoughts are with you.

Merl from the Modsupport Team

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Holy smokes TJ. I was seeing an old post a few days ago and was thinking it had been a bit since we’d seen you. I sure wish it hadn’t been for this reason! Any thought that this might be a cause of some of the challenges you have been having? Hopefully the recovery continues, and always happy to see you here! Take Care, John

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Tom,

Tom Tom Tom, what a time you’ve had. I, too, noticed that you hadn’t been around for a bit and I was wondering. But if you are nominating people for Rock Star distinctions, I think it’s YOU who needs one. Wow, that has been quite the trial for you, and also for your whole family. I’m glad that you’re back home, and getting comfy in the nest again.

Keep in touch, please. I don’t mean one of your long, beautifully-crafted, works of literary art. We really value and enjoy those, but that’s not what either of us need right now: a couple of lines with a wave and a sign that you’re progressing would be valued by me and everyone else too.

Would you mind if we put the word 'round to the rest of the community? You’re one of our best-known members, and I’m guessing that many people here would want to know about your recent challenges. Maybe @DickD could put the word around? Please let me or Dick know.

All the best to you and your family

Seenie

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Tom

It’s great to hear from you and I’ve been worried for a while because even when you last shared on here, you weren’t yourself.

I’m glad you found something & have got a bit sorted. Completely understand the need for you to take it easy.

But we are always interested in how you are and will always value a “hi” whenever you fancy.

Very best wishes,

Richard

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Seenie,

I appreciate it, more than you know. Feel free to share with anyone you feel can benefit…

TJV

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I don’t think you were well on St Valentine’s. Your post that day was quite random and out of character. I thought as much when I read it then. Next time, I need to say it out loud.

I’m glad you’re getting better.

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Yeah, I was about 7 days into the slide at that point…

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John,

That’s one of the avenues we are pursuing.

TV

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Merl,

Thank you. Don’t take my type of medical details as accurate. They might be totally off. I’ll report back after next Monday with more accuracy.

Thanks all,

TJV

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My thoughts are with you. You’re always optimistic.

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@DickD and @Seenie - so, another two weeks and another two weeks of unexpected time in the hospital. I was supposed to have one embolization last Monday. Ended up having one on Monday and another one on Tuesday. They were both great successes (according to my doctor) and that’s good. But because of the changes in blood flow, the changes in nerve pressures and the affects of 2 days in a row with general anesthesia, it’s been a long two weeks, I’ll write more on that to everyone later. The good news is that I’m on the mend (not totally mended) and I’m going home tomorrow.

I expect I will be able to be on here a bit more as time moves on from here…

Cheers and God speed to all of us…

TJV

I have had a lot of really interesting and educational individual discussions while I’ve been at the Rehab hospital. I’ll fill you in sometime and put together a list and start a series - “The things I learned…”

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Oh boy, another round! But it sounds like you’ve done pretty well on this one too. We’re looking forward to hearing more of the details later.

What a great germinating idea, “The things I learned…” Can’t wait for my preview copy! :blush:

Have a wonderful weekend with your nearest and dearest! You’re getting better, summer’s coming, and soon (I hope) we’ll be enjoying fine weather and a brighter social scene.

Thanks for touching base!

Seenie

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Its really good to hear from you. Seenie could tell you we had a busy week this week but among the various things cracking off, I was thinking about you and nearly reached out to say “hi!”

Whenever you’re well enough to have a Zoom beer, I’m up for a Zoom beer.

Really good to hear you’re rather better than you have been recently. Keep on keeping on.

Lots of love,

Richard