More Surgery on the horizon

Hi Merl, How do you feel physically and mentally? Greg

Hey Greg,
I’m just going with the flow, presently there’s not much I can do. I need things to settle Then reassess from there. While I’m still recovering, just slow it down. I keep telling others exactly that, so I’d better follow my own advice :wink: :laughing:

Mentally, I know what I need to do but doing it…? That’s the bit I’m not too good at the actual ‘doing’ bit. An example, I went to put the rubbish outside, simple enough. But I got to the bin and saw there wasnt much in the bin. So I started pulling weeds to put in the bin. The bin was filling up, so I got the loppers and chopped up the weeds in the bin to fit more. Ripped up the remaining weeds around the bin, putting them in that bin. Then took the bin up the drive (100m)

Now, I walked out there solely to take the inside rubbish bag out to the outside bin. I had no sunglasses, no cap and its around 38C here today, so fairly warm. It needed to be done, so I did it. But I over exerted a bit too much and I’m paying for it now. I should have broken the task up into steps, but I started and kept going. Idiot me. Then I kick myself because I should know better (or so you’d think).

But, overall, I’m still feeling daily improvement, so I’ll take that as a plus.

Merl

2 Likes

Well Merl, You should know with a mind as small as mine you’ve taken up an inordinate amount of space as of late. I’d really appreciate it (for selfish reasons) that you quickly and fully recover so I can stop losing my keys and phone.
If you’re ever lacking employment pal, come here and pick weeds. With American work ethic these days, picking exactly one weed is overly tasking for the z gen. Be well and please rest a lot, Greg

2 Likes

Right, so I had the neuro appointment… …hmmmm.
I’m not sure whether the person I spoke to was a neuro nurse or a Dr, but either way here’s the outcome.

Because I’m still ‘In post surgery recovery’ no further neuro procedure will be undertaken at this time. I’ve had the final post op check up with the ENT, was all OK with the outcome and the pathology has come back all clear, no cancer, it was an abscess. PHEW, feel like I dodged a bullet there.

The neuro want to wait another month, repeat the MRI scans AGAIN. Their hope is that things may resolve all by themselves, possibly. I don’t understand how, but, I’ll wait, still planning on avoiding it all if I can.

(Greg, when you find your keys you can come and locate mine :rofl: I tend to put things somewhere safe, where nobody will ever find them … …not even me :wink: )

Merl

2 Likes

Hiya Merl, I’m glad they didn’t find cancer… that’s a relief. Phew! Can you describe how you’re feeling now? Sore? Numb? Pain? Best wishes as always, Greg

1 Like

Sounds as good as anything, Merl! Keep it up!

Richard

1 Like

I’m still sore in my throat (tonsils) and mouth (teeth), but not excessively or more than to be expected. I still have the omni-present fluctuating headache, but that’s ‘normal’, well, normal for me. My sleep hasn’t returned to normal and that really screws up my day time, I seem to be more light sensitive atm, but that’s a head thing, an eye thing and a sleep thing. Roll them all together and… YUCK. I could just hibernate, but that drives me a bit stir crazy, I need to be doing something or my minds starts going tick, tick, tick… ending with a negative mindset. NASTY. So, I ‘Try’ not to go there.

One thing I’ve learnt is that I need to be super flexible to manage ‘Me’ :smile: And well medicated :rofl:

Merl

1 Like

Hey Merl, That’s certainly not a walk in the park. You are truly a tough guy and your spirits seem good. I’m giving you compliments but I don’t want it to go to your head. (I love that corny pun.)
The sleep thing is rough for me because I get grumpy and scattered. I went to Mexico this week and had dental work and bought some melatonin. I’m about 3 hrs away and I can save a ton of money and I have found a good dentist for a fifth of the cost. It’s a real racket in the the States if you don’t have dental insurance. If you ever make it to Phoenix we’ll kill three birds with one stone. (Scotch is #3) Keep resting a lot please, Greg

1 Like

Ohh, Greg, none of it is a walk in the park and because it’s all in the neck/head area it all revolves around my head (both physically and mentally). If I really sat myself down and thought about it all I’d end up a permanent resident in a psych ward :rofl: (I say that with a :rofl: but it can be a little too real to be laughing about at times).

Here in Australia I think we call that ‘Thick’ (dumb) :rofl: rather than ‘Tough’

I’m grumpy and scattered even with sleep. Years ago I used to teach people with disabilities and I had to have the patience of a saint some days. Now, forget it. If someone get’s on my case or crosses me, get ready, I’m more likely to rip them a new one. My patience has up and vanished. And my tolerance is minimal. Prior I was like a diplomat, carefully choosing my words so as not to offend. Now I say the first thing that comes to mind, no filter. It’s honest, only a little blunt sometimes and I can offend without even trying ( Can you imagine if I tried :astonished:). Add a lack of sleep and Ohhh, no one is safe :rofl:

Merl

1 Like

Hiya Merl, I love the Aussies for some reason. Never been there and never really wanted to go. It was just a few clips from Aussie farmers after those bad fires. Both men and women, tough rancher-type boys and gals, on film crying without any shame about their lost/suffering animals. It touched me deeply.
I’m better now with Lamotrigine (anti-convulsant) but some of the seizure meds (Kepra was the worst) made me an absolute expert at pissing people off. I can still get triggered when people with no direct experience insist on trying to replace my judgment with theirs even though I have personal experience. (That happens a lot re the dental treatment I’ve had in Mexico. Based on triple heresay, my lawyer self talking, they will tell me I’m basically stupid. Makes me nuts.) Keep resting a lot pal or I’ll “rip you a new one.” Be well, Greg

The recent fires? We have some decent fires here in Oz each year. I think they’re in the Northern Territory at the moment. Some years the north get it bad. Some years the west. I’m in the middle of Oz, it a state called South Australia and a few years ago we had a fire storm run through here. I’m out in the country, surrounded by cropping fields, full of fire fuel, and when it went through it was scary as all hell and it ROARED. Everything turned black. The air, the sky, black, no light. We had a fire plan and got out. But coming back, that was shocking. In this tiny town of approx 10 houses, 3 were gone. Our’s was saved as just in front of me was a new build and the helicopter dropped a load on their block, protecting mine. I have a small paddock behind me, burnt bare. So, the fire was close, but we got lucky.
I think you’re correct for the farmer’s with stock, it’s a cruel existence. They raise the stock then have to destroy it. But it’s also all of the infrastructure the fires destroy. 100’s and 100’s of Km of fencing were all of the fence posts are burnt off to ground level. Some places as far as the eye can see there’s nothingness, just black.

I went through a process of trying all sorts of med (incl. Lamotrigine). “Here try this…” says the Dr. Ohh that didn’t work. Here takes these instead…" That was a rollercoaster, I was up I was down, I was sideways and some of that stuff just messes with the mind. But via that process we worked out what works best for ME. I kept it all documented, then when I saw another dr and he suggested another trial I could say "already tried ‘x’ medication and here’s the outcome/results.

Ohh, I’m a full paid up member of that club, have been for years. I don’t even need the meds for that. For me, with some people it seems to come naturally (Especially Dr’s). I don’t even need to try. :rofl: :astonished: When they start diminishing my symptoms I tend to ignite :boom:

And don’t worry, I’m still resting (where I can)
Thanks
Merl

1 Like

Hi Merl, I’ve been off the grid a bit in more ways than one. But I’m still afloat (some might call it adrift.)
How are you doing Pal?
Wishing you freedom from pain and worry, Greg

1 Like

Apologies for not being around as much of late

I received a phone call from the neurosurgical unit of the hospital. And I’ve been trying to process and comprehend it all.

They had previously altered the settings of the shunt. It seems that if those changes had made an improvement, which they haven’t, then an alternative drain ie a craniotomy and EVT ‘may be’ of benefit. This is not the case and in the neurosurgical dr’s/surgeon’s words “Due to this the offer of surgery has been withdrawn.”

Presently, I’m in a bit of a WTH mindset. Relieved to the extreme. I can breathe again. But the wording of the statement took me aback. “OFFER” It wasn’t an offer. It was a straight out recommendation. I had personally requested the additional scans, seemingly the additional scans were the evidence they needed to say ‘No’. And yet when I made the request, I was told those scans weren’t needed. I’m confused.

It seems, the shuntogram shows that there is minimal flow via the shunt and this was why the offer was made, but as I said earlier ‘…if the fluid is draining, why have further surgery to make another drain…’ This surgeon doesn’t like shunts, hey, I’m not a fan of shunts either. But if there is no increase in ICP then an additional drain to manage ICP makes little sense. My 2nd opinion medicos agree.

Now, don’t get me wrong, I’m more than just happy it’s all been cancelled, but this flip/flopping is REALLY annoying. Feels like a coin toss “heads or tails”.
“…DON’T BE HEADS… …DON’T BE HEADS…”

The long and short of it all is… …I GOT MY WISH and avoided surgery atm… …PHEW

Merl

4 Likes

Sounds like the right outcome was arrived at. I wouldn’t worry about the words used to get there. Let’s just assume that the average neurosurgeon isn’t good with words.

Good to hear from you.

Best wishes,

Richard

4 Likes

Hiya Merl, Well any outcome that avoids surgery is not the worst. As far as your emotions go and those that care about you… well… let’s just say you’re being kept on your toes. (Wouldn’t want you to get complacent about your own life would we?!)
Reminds me of the mafia movie where they make you an “offer you can’t refuse.” (Otherwise known as a no-brainer. Pun intended…) Stay well pal, Greg

3 Likes

Hello Merl, I’m just checking to see how you’re doing. I don’t want you to take this as a license to get all whiney and nostalgic.
I do hope that if your wife decides to off you, you’ve left her enough of an inheritance to pay for her legal fees. She should be able to prove justifiable homicide quite easily.
I’m in the process of finding my third neurologist this year. They’re dropping like flies around here due to retirement and Gd knows what else. Of course the insurance element is a big factor and it seems like a full time job just trying to understand the system and nuances of the benefits. oyyyy yoy yoyyy! Otherwise my general practitioner, who I trust, found little wrong with me besides the ongoing seizures I’ve had since my two craniotomies 50 years ago. (Yes, I’m an official old fart.) Be well pal, Greg

2 Likes

Hi Merl, I’m just wondering how you’re doing. Emotionally it’s been rocky for me lately but that may be par for the course in the AVM world.
Because my arteriograms were in 1973 the clips are most likely not MRI compatible. I have a feeling those records are on microfish somewhere in Yale/New Haven. I’m not doing bad as far as seizures lately. Got a new neurosurgeon. They always like taking new pics. So I’m waiting on the results from the EEG which I find kinda fun. (I must bee weird. haha)
I’m also reading up on CBD because there is starting to be some good science that it can control epilepsy. We have so far to go in brain research and the USA for all it’s wealth is not even the best. I hope you are reading this in relative sanity and your wife still hasn’t offed. you. Your friend, Greg

2 Likes

Hey Greg,
Yea, I’m still hanging around (I tend to linger, like a bad smell :rofl: ). I’ve been rather quiet as it seems its my wife’s turn to have her health do a somersault (again), it’s been repeated medical appointments/test/scans, you know the routine, only it’s not for me, so that’s been good :smile:

Micro fish? (I think you mean microfiche) and, shhhh, 'cos I’m old enough to know what you’re talking about :rofl: . Trying to find a microfiche reader might be an issue, I don’t know of any government dept that still uses it. It’s all on hard drives now. Some libraries might still have them.

My health, I’ve sort of given up on. I’ve decided to maintain my annual scans, keep an eye for any changes, but otherwise, leave it all alone. Could things be better? HELL YEA!!! But then by the same accord, Could things be worse? HELL YEA!!! and if they can’t give me any surety surgery would improve any of it, I’m not prepared to take the risk. That is 100% my choice. If and when it arises that I have no choice… …Then I’ll re-assess from there. Is it the right choice?? I don’t know… …flip a coin. I simply don’t want a craniotomy again without a clear need for it.

I’m way past the reading up stage and have been medically prescribed medicinal cannabis for years now. I couldn’t agree more in regard to brain research. They like to treat the body as a machine, each part plays a role. But the brain controls and regulates it all and for all of their studies, they still haven’t got it all worked out. They know cannabis works ‘anecdotally’, they don’t know scientifically the how or why.

Many years ago the head of the U.S. DEA had cannabis classified as a class ‘A’ drug, a dangerous narcotic with no medical benefit, therefore all scientific studies were restricted. It’s really only been the last 20-25yrs that it’s been studied and ‘semi’ accepted. To obtain the approval for it here in Australia it cost $800 and that was without the medication itself. And the medication is not cheap either, hence me saying ‘semi’ accepted.

“…relative sanity…” WHERE?!? Ohh Damn, I missed it again, it keeps flying past me :rofl:

Merl

1 Like