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Traumatic Brain Injury

Ohh dear, here we go again

Thanks Aly,
"Are you comfortable with this new doctor? " PCP? Yes, I am. He’s very thorough and if I have questions he’s willing to answer and if he doesn’t know, he’s willing to say that too, rather than just having a guess. As for the new neuro’s ? I’m not sure at this point. I’ve just received mail for the next couple of appointments in the process for early next month. One’s for another MRI scan, which I was told I couldn’t have due to the programmable shunt, but the neuros now tell me otherwise ??? I don’t know.

Then I have another appointment with the neuros for them to make a plan, so it’s all in process and considering it’s the public health system which is fairly overwhelmed from all reports, they seem to be acting rather promptly, so that’s a plus. (I have to take every little plus I can get at this point). I have my list of questions all ready to go.

Scary ya reckon, hmmmm just a little, and this is just the start of the process. I’m sort of caught somewhere between a rock and a hard place, with no control at all. And for a control freak like me, that’s a problem. I’ve repeatedly told other’s

    "God, Grant me the serenity to accept the things I cannot change
     The courage to change the things I can and
     The wisdom to know the difference"

So where’s that bloody wisdom gone now. LOL. I told the surgeon the other day “Just chop it off at the neck. That’ll fix it all” He looked at me in shock/horror. He did not see the funny side of it at all, but I have to make light of it all or I’d curl up in a ball and lock myself away from the world and there’s no use in doing that either. So around and around we go. AGAIN.
Thanks again, writing it all out helps me get it outta me (another plus).

Merl

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Merl,
I’m glad you like your pcp, but hate that you’ve been told different things by different neuros. How are we suppose to know what to do when they have differing opinions about major health issues? At least they are moving quickly, it sounds like. And you sound well prepared with your questions.
Glad you have kept your sense of humor, you just keep those drs on their toes with it!

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Thanks again Aly. They seem to be great at giving minimal info with the idea that it saves us from over thinking things. WRONG!!! For me, when they leave gaps in the info my mind wanders off and tends to fill the gaps with all of those worst case scenarios. I’d much rather they give me the full story, good, bad or indifferent. At least that way I have the scenarios and less chance of my mind heading off on a 90degree tangent.

Merl

Had an appointment with neurosurgery today and you could have knocked me over with a feather. We saw a younger female neurosurgical consultant and when we were talking about the headaches she stated “We know a lot about the brain BUT we do not know it all… …we do not know why some people have surgery and recover with very little pain and yet others have on going issues…” WHAT!!! A neuro who will admit they don’t know it all??? I looked at the wife, mouth a gape in shock. I was NOT expecting that AT ALL. What I was expecting was for them to say it was something I had done that had caused my pain or my use of pain killers that had exasperated my pain, but I got none of that. In fact she stated she understood that people need pain meds to manage daily pain, just to use in moderation (which I do anyways).

When I explained the situation she was empathetic, went and consulted another dr, came back and said she needed to talk to another surgeon but would keep my file open and get back to me within a few weeks. This was pleasantly shocking, what I expected was a ‘Hello… …goodbye, see you next year’ but instead I got genuine concern.
So, let see, they may, just possibly, act, instead of flogging me off (again).
One can only hope.

Merl

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Ha! Well, Merle, the wonders the never cease, I guess! This sounds positive and I’m happy for you. Freaking finally. I hope this lady can help you. Have you heard anything else from this dr?

No Aly, not yet. As I say its all happening within the public system, so it’ll take time. They have a conference once per week to discuss patients, it’s been just over a week since my appointment. But she did say that I would probably expect to hear something within a month, which is fairly speedy for the public system here. Usually I’d be waiting months and months, that is, if I heard anything at all. As I said …"what I expected was a ‘Hello… …goodbye, see you next year’… If I’d gotten a call within a week I’d be suspecting there was a MAJOR issue.

Merl

I’m sorry that the new neuro wants to do different stuff, make sure that the risks of non surgery are greater than the risks of surgery. Maybe things will be good. But it sounds pretty involved.

Yea Marty, I’ve been putting off the surgery route for a long time (6yrs) and things have gotten progressively worse and worse. Now we’re at the point of “We’ve gotta do something…”. If the tubing pierces an internal organ then I’m in BIG trouble. They now need to establish how involved the other anatomy, blood vessels etc are. If they simply go in and pull it out without doing so I could end up having a major bleed or worse, but the wheels are turning (slowly). That’s about as much as I can hope for.

Merl

Just checking in…Merl, how are ya doing?

Hey Aly,
Still having lots of discomfort, but it isn’t considered life threatening, so I wait.
It’s all a waiting game at the moment. Waiting, waiting, waiting…
The neuro I saw said I should hear within 4 weeks but then that’ll be up to the surgeons. There seems to be a bit of an attitude of ‘Well you’ve waited this long, so you can wait a bit longer…’

Merl

Hey People,
OK, so we’ve had the follow up and, yup, they’re going to operate. When? well, that’s a whole other story. The best I can hope for is within 12 months, I’m not at all surprised, in fact I was expecting longer, so 12 months ain’t too bad. Just have to manage the pain and I’ve been doing that for a while, so just a case of same, same. If there’s an opening (No pun intended) they may decide to do it sooner, but don’t bank on it, so within 12 months it is. Am I happy about it all? Not really, but one thing I have learnt on this journey is that I can’t make them do anything until they are god damn good and ready.
So there it is, within 12 months.

Merl

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WoW, dude let me know if you ever got the operation

Hey Johnbarry,
Ohh, don’t worry I’ll be sure to let you all know if/when things progress either way, that is, if/when they decide to go chop-chop or if things go backwards any further. Presently it’s all a case of wait and see. Waiting, waiting…

Thanks
Merl

I’m sorry, Merl. That waiting would drive me bananas. What’s up with that? Are there not enough doctors to do it before that in your area? Around here they Chop Chop as soon as they get the chance it seems like.

Hey Aly,
“…That waiting would drive me bananas…” Me too, but then I can’t do much about it all. We’ve just had a massive new hospital built, seemingly the most expensive building in the southern hemisphere. Part of the theory was that with a new hospital things would run smoother and quicker, but that has not been the case. If someone has an operation they are still going to need a similar recovery time, new hospital or not, so their ‘quicker’ theory is doomed before it even starts.

Our medical system is similar to what the planned ‘Obamacare’ was to be ie Free for everyone. If it’s deemed ‘urgent’ there’s no waiting but if it’s deemed elective, well, some people can be waiting years for things like knee replacements, unless they have private health cover. The private insurers won’t touch me as I have a ‘pre existing medical condition’ and as for the term ‘elective’, I didn’t elect for them to leave a plastic tube floating around inside of me. I’m in pain due to it but the pain won’t kill me, so they say “That’s elective” Grrrr.
Damn doctors.

Merl

Aye mate, please let me know

Merl, I hate that you are going thru this. I guess there is nothing you can do, except hang in there. Doesn’t seem right at all. If you are in pain, it shouldn’t be elective. I know we aren’t talking about a minor headache, either.
I know a lady who had 3 aneurisms, the drs found them a few months ago, and she had surgery a week ago. Now, something isn’t right because she isn’t waking up and the drs keep saying they think she will, but its been almost 7 days, and she has not. Have you ever heard of anything like that? I have not.
I still think your situation is a bunch of bunk, but realize you can’t help it at all.
Hope everything else is going as good as it can be.

Yes, I have both heard and seen this occur. As I’ve mentioned before I’m sure, I worked with people with disabilities for many years. Depending on where the neurosurgery was needed, there may be significant swelling and this could alter both blood and CFS flows. These alterations can take time for the body (and mind) to adjust too. One aneurism can have major effects, so three? WOW, that could well be life changing and take quite sometime for the body to normalise from. I’d say, don’t be losing hope yet. The best thing for a body to recover is sleep and the situation may well be slowly, slowly right, down to VERY slowly. But a week into recovery?.. That’s like the blink of an eye in neurosurgical terms.

As for my situation, ahh well, as (again) I often say “It’s all s&*t, it’s just the depth that varies”, and you are correct it’s not right, but it’s not up to me unfortunately. I have to accept I have no control and for a control freak like me that’s one difficult thing to accept. But here we are…

Merl

You sound more like a doctor than a TBI survivor. You were right, my friend woke up earlier and her son said she was drinking coffee. I should have waited a bit longer to get worried, I guess.
LOL, your saying is correct. Ha ha. You have a great attitude about it.

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Thank you for saying that, but, don’t get me wrong here, I still have those days of ‘F$#% the world and everybody in it’ and I do not have all of the answers, in fact, not at all. But the way I look at things is sure things aren’t great, but in saying that, I also know that they could be worse, a hell of a lot worse.

I think that’s because I’ve been on both sides of the equation, both as a worker and as a patient/survivor. It has assisted me over the years as I strongly believe, had I not worked in the field, my frustration with the systems and my own recovery would REALLY have done my head in (No pun intended).

Merl

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