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Old 01-18-2014, 08:06 PM #1
lcms0516 lcms0516 is offline
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Default Possible revision(not me)

I am a 46yr.-old male with congenital hydro from the U.S.. I have a friend(31yr.-old female) in British Columbia, that was first shunted around July 4, 2012. Recently(within the last couple or weeks), She has been having intermittent headaches. She told me at one point, on a scale of 1-10, they were as bad as, an 8. Her headaches supposedly went away about 48hrs. ago.

But going on my personal experience with congenital Hydro, and her attributing her headaches to stress(she n' her boyfriend/fiance of four years separated about two months ago), I am not entirely convinced that her headaches are from stress.

Any feedback would greatly be appreciated.

Last edited by lcms0516; 01-18-2014 at 10:09 PM.
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Old 01-19-2014, 12:31 AM #2
Merl1n Merl1n is offline
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Default Play it safe

In my opinion, play it safe. See a Dr, get a scan. If its all clear, its all good. If it needs follow up, at least she knows. I have NOT done this and ignored symptoms 'cos I was busy, didn't have time, couldn't be bothered and every other excuse known to man. This has caused more significant symptoms which, in one case, was cause for a collapse at work and ambulance to hospital. I knew something was wrong but pushed it aside and continued until my body said "no".
Since my last revisions, Jan and Aug 13, things have not improved. I may have left things a bit long this time and actually done more damage by not getting it seen to earlier. Now the dr's say its just recovery pain, but 5-6 months should be enough IMHO. And I'm not very patient when it comes to pain. I WANT IT RIGHT AND I WANT IT RIGHT NOW . The joy of pain

So, Play it safe, get a scan would be my advice. The sooner she knows the safer it will be for everyone involved

Merl1n
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Old 01-19-2014, 12:58 AM #3
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If it is due to an intermittent blockage, a scan may not help unless she is so lucky as to get the scan at just the right time (has never worked for our kid, really a pain). Definitely encourage her to raise intermittent shunt troubles as a concern to her neurosurgeon and ask them how they'd like to follow up. And maybe call them every time it happens (and track them on a calendar to see if there are other patterns). Someone on hyceph-l may have a better suggestion.
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Old 01-19-2014, 06:30 AM #4
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Quote:
Originally Posted by pogo View Post
If it is due to an intermittent blockage, a scan may not help unless she is so lucky as to get the scan at just the right time (has never worked for our kid, really a pain). Definitely encourage her to raise intermittent shunt troubles as a concern to her neurosurgeon and ask them how they'd like to follow up. And maybe call them every time it happens (and track them on a calendar to see if there are other patterns). Someone on hyceph-l may have a better suggestion.
She needs to see a new neurosurgeon for now. Her original neurosurgeon is almost 1,000mi.(1,600km) away, in another province.
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Old 01-19-2014, 02:01 PM #5
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Quote:
Originally Posted by Merl1n View Post
In my opinion, play it safe. See a Dr, get a scan. If its all clear, its all good. If it needs follow up, at least she knows. I have NOT done this and ignored symptoms 'cos I was busy, didn't have time, couldn't be bothered and every other excuse known to man. This has caused more significant symptoms which, in one case, was cause for a collapse at work and ambulance to hospital. I knew something was wrong but pushed it aside and continued until my body said "no".
Since my last revisions, Jan and Aug 13, things have not improved. I may have left things a bit long this time and actually done more damage by not getting it seen to earlier. Now the dr's say its just recovery pain, but 5-6 months should be enough IMHO. And I'm not very patient when it comes to pain. I WANT IT RIGHT AND I WANT IT RIGHT NOW . The joy of pain

So, Play it safe, get a scan would be my advice. The sooner she knows the safer it will be for everyone involved

Merl1n
I agree with everything you said.
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Old 01-19-2014, 04:37 PM #6
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Best you can do is encourage her to find a new surgeon. You aren't your friend's keeper. I wouldn't get all wrapped up in drama if the person doesn't want your input.
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Old 01-19-2014, 05:29 PM #7
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Best you can do is encourage her to find a new surgeon. You aren't your friend's keeper. I wouldn't get all wrapped up in drama if the person doesn't want your input.
See, That is the difference. I don't 'rollover' when someone 'ignorantly' says 'NO'.
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Old 01-19-2014, 05:41 PM #8
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See, That is the difference. I don't 'rollover' when someone 'ignorantly' says 'NO'.
Yeah, seems to me this isn't the first time you have been not listened to (there was a lot of relationship drama with either the first shunt or a revision unless you never posted to one of the other mailing lists). Trying to *make* someone listen frequently causes them to dig in more, not less. Respecting another person's boundaries is the better response, not otherwise.
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Old 01-19-2014, 10:28 PM #9
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Yeah, seems to me this isn't the first time you have been not listened to (there was a lot of relationship drama with either the first shunt or a revision unless you never posted to one of the other mailing lists). Trying to *make* someone listen frequently causes them to dig in more, not less. Respecting another person's boundaries is the better response, not otherwise.
Figures you would say something like that. Negatively judge me before you know all the facts, really smart.

When it comes to simple emotions, I don't 'push the envelope'. But when it comes to someone's physical health, I don't mince words.

In April n' May 2012, she had been telling me about having headaches. I asked her about getting a pregnancy test. She discounted it, and I didn't push it. It turned out she was two months pregnant when I asked her about getting a pregnancy test. That very pregnancy was the cause of her hydrocephalus, nearly killed her.

In Nov.'02, my (ex)fiance was finally diagnosed with NPH as a result of having been physically abused as a child.

In Dec.'05, she slipped on 'black ice' while we were waiting for a bus. For the next eleven months, I fought with the doctors' about her shunt being busted. I finally had to take her to a new neurosurgeon. The moment he saw her scans, he nearly blew a gasket. He said I was right.

You may sit silently by when someone you care about is in medical trouble. I don't sit by and watch like my (ex)wife did, as I had a near-fatal seizure.
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Old 01-20-2014, 10:43 AM #10
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Mm, you accuse me of judging you and then turn around with negative speculations of your own about me. I think that says a lot about you.
Dealing with docs who don't listen is a completely different issue, think that is part and parcel of dealing with specialists/humans. Aside from encouraging and supporting your friend, it really isn't something you control. But how you communicate with your friend can leave open doors or cause her to want to close them.
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