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22

Ohh that ‘waiting’ can be a damn torment in-itself. I’m on that list myself now. AGAIN.

I had scans 5-6 months ago without any dr response, so I thought all was good. Then a few weeks ago I get a call from the hospital, ‘…we have an issue, and we need to see you…’. I was travelling along OK, yes, I thought about it all occasionally. The headaches give me no choice but to be reminded, but I can manage OK. Then I get the phone call and that ‘occasionally’ turned to a ‘continually’. I attended the hospital appointment, they want more tests, so I’m back on the waiting game again and they still haven’t dealt with ‘The Issue’. They said I’d hear in 2 weeks… …that was 3 weeks ago. So, I wait and I stress.

Kev, the weather and barometric pressure is also one of my triggers. I’m in Australia and my temps range from 25-110F. For me it can be a real battle to keep myself on a median. Too hot, too cold and my symptoms multiply. Sitting here at the computer and I can feel this pressure, we’ve got a storm coming in tonight. I don’t need a barometer, I can feel it.

Merl from the Modsupport Team

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23

Sorry to hear of this all happening, Merl! This is one of the hardest things about anything medial related. Not in anyway as worrying as you have it. In February, I went in for a simple blood check. Liver enzymes were all crazy. They called and informed me of this and booked me on the next appointment. The problem with that is it was the first last week of march. So I sat around for a month to talk to the doctor about it just so he could order more tests and tell me all the things it could be. Went straight to the blood place, got the blood drawn. A few days later I thankfully got a message that everything was normal again. Phew. I’m theorizing I was just taking way too much tylenol.
Let us know how you’re doing merl.
Best regards,
Kev

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24

Hey Kev,
I have to agree the wait is never good

But I have to disagree with your statement above. I think it’s all relative. I’ve learnt that I have to accept I have no control here. I have to hand that control to the medicos (and for a control freak like me, that ain’t easy). With my initial diagnosis, every test/scan they sent me for I was on tenterhooks awaiting a results, I was a ball of stress. Now, that I’ve been on this merry-go-round for a while, 20+yrs, I try not to hit the “PANIC” button too soon. Some days I’m a bit like a swan floating on the water, calm and serene. But underneath, that swan’s paddling like crazy trying to stay afloat. I try to portray ‘calm and serene’, but my mind…

I think when we have a medical condition, we’re a bit more aware where a ‘less than satisfactory’ result can lead, so those ‘PHEW’ moments can have much more weight behind them than normal. But then by the same accord, when we get those ‘less than satisfactory results’ that weight can be MASSIVE. The acceptance that I have no control, that’s a big problem, I don’t want to accept ‘THIS’. The reality is I have no choice but to accept it all. But I still don’t like it.

Merl from the Modsupport Team

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25

Yes Merl,
the same as you, accepting these things is almost impossible for me because I am also a control freak. Mine is much more severe. I occasionally fight with doctors, or at the very least I argue with what they said in the appointment long after the appointment. I spend a lot of time thinking things over and the million things that could be said to me and then what I would do in response to them. This of course leads to even more stress for me. Going through every scenario and thinking all the ways i can solve it or handle it or respond. I’d like to stop, but it never will. It’s supported by my utter lack of patience. I acknowledge I need to change, but that won’t be happening lol. My girlfriend is not a control freak, but she’s severely stubborn about many things. It is fun to bump heads with each other over making a decision.
My friend reads a lot of stoicism. He encourages me to endorse it constantly. I refuse to. I think philosophically it doesn’t work. All the more reason to justify me being a control freak lol.
Best regards,
Kev

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26

One of the useful observations that TJ, one of our exec directors and ModSupport person, has made (and I can concur with my own experience) is that doctors are normal people, often towards the end of the somewhat introvert end of the scale. This can lead on to less satisfying conversations than we’d like but (in my opinion) if they’ve got the engineering nous to sort out what’s wrong with the plumbing in my brain, actually I’m ok with that. My consultant was very much more towards the introvert end of the scale when we met to discuss my treatment but I came away much more convinced of his focus on the mechanics that needed sorting out than on the subtleties of dealing with people. In his element in the X ray theatre undertaking my embolisation, he was a totally different character, wholly in command of what he needed to do. It was really quite an insight.

Don’t go too hard on the words and the softness of speech. Do they know what to do with me to fix it? That’s the question for me.

None of this is easy :+1:t3:

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Hey Kev,

Ohh, me too Kev.
For many, many years I’d been telling medicos ‘Something’s not right’ but been told I was wrong, so I ignored it all. Was told it was all psycho-somatic, a figment of my imagination, ‘…it’s all in your head…’, little did I know just how real that last statement was. Then add 10-15yrs, they came out with the line ‘Ohh, look what we found…’ as if it was all some new discovery. My blood boiled instantaneously and that Dr, he got an earful of language that can’t be repeated here :smile: Then they operated, telling me ‘All fixed’ only it wasn’t. I tried to tell them again ‘Something’s not right’ but got the response 'Well, I’m the dr, I’ve done years of study, so I know… …You? you’re just the patient, you wouldn’t know…" Luckily, my wife was with me, otherwise I’d likely have punched the man in the nose. Arrogant sod. Three months later and I was back on the operating table again.

In that 3 months I’d rolled every scenario over and over and ov… in my head. My thoughts for the 2nd surgery was ‘I’ve been here before, I got through the last surgery, so I know what’s coming and I’ll get through this the same…’ only it was nothing like the same. So when they came out with the ‘All fixed’ line again I let rip and the dr was under no misinterpretation that I might have accepted his explanation. I did not.

I ‘can be’ quite articulate, I ‘can’ choose my words carefully and I ‘can be’ very diplomatic in my approach BUT when I get stressed/symptomatic my vocabulary shrinks, my choice of words is direct. No niceties, no diplomat, and if you don’t get the message the first time round you’ll get told again (including expletives), “…now do you understand!!!” Well, that Dr labelled me as a non-compliant patient and that label followed my file everywhere. So, I’d advise a word of caution in being too direct.
My experiences with medicos have not been great and this has tainted my view, somewhat. I think if you find a good Dr, grab a hold and don’t let go. They can be very hard to find. I did have a good one, but he retired and since then, not great.

Now, well, I’ve pretty much given up on find that elusive ‘answer’. I don’t think there is a single answer. As I’ve said to others ‘The medicos like the A+B=C theory (Condition A + Symptom B = Diagnosis C) but that’s way to simple for me. For me it’s more like A+B-CxD/F√G… and every one of them is variable, so the outcome, well, that’s anybody’s guess’. I’ve had to learn to manage the best way I can, if that’s rest, if that’s medication, if that’s a change in task, if that’s a change in environment, that’s exactly what I do. Whatever works for me on that day, at that time.

But, what I have found very beneficial is hearing from others that my oddball symptoms aren’t all that oddball at all, others having gone through neurosurgery report some very similar experiences. I needed to hear that because it can all be very isolating, not many people go through all of this. It’s been Ben’s Friends that has allowed me to do that.

Merl from the Modsupport Team