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Author Topic: VP Shunt Adjustments  (Read 4952 times)
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crando47
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« on: July 24, 2009, 10:38:32 PM »

Hello everyone,

I'm here posting on behalf of a friend with IIH and a VP shunt.  It was installed last October after years of suffering from high CSF pressure due to birth control she was taking.  After the shunt was installed, it was set to a low level and she was basically told to see how it went and it could be adjusted as needed.  For months, she suffered from low pressure headaches, despite the number of times the shunt was adjusted up.  Back in January, she went back on her birth control for other health reasons, which caused her pressure to go up again.  Now she suffers pressure headaches again, located right around the shunt.  However, if she stops taking the birth control for a certain amount of time (last time it was two days), the low pressure headaches came back.  Her shunt is currently set to 150, which it was set at before she started doing the birth control again as the neurosurgeon attempted to deal with the low pressure headaches (he even said back then that 150 is on the high end).  She's asked about the possibility of lowering her shunt setting down to like 145 or 140, and has been told that there is too great a risk of ventricle collapse.  I was just wondering if anyone has any ideas or has had any similar experiences that might be helpful for her (she'd be posting here herself, but her pressure headaches have been very bad this week, so I'm trying to help her out.  She's been trying some water pills her doctor gave her in hopes that they'll bring the pressure down a little, but so far no luck.)

Thanks for reading!
Charlie
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x Shelly x
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« Reply #1 on: July 25, 2009, 04:17:50 PM »

 wave Charlie,

  It's nice that you are helping out your friend..  Smiley: smiling  We have lots of members here with VP shunts,  I'm sure someone will be along shortly who can possibly help..  My duaghter has an LP shunt so can't help unfortunately..

   hug Michelle
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TRINITY1
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« Reply #2 on: July 25, 2009, 06:37:29 PM »

Hi Charlie

Sorry to hear your friend is struggling. My daughter doesn't have a shunt but with regard to the meds, they did take a while to kick in, maybe a week -10 days before she felt any better.

Not sure if this is the case with your friend but like Michelle says, hopefully others will be along shortly....

Meanwhile

 Smiley: group hug

Natalie
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crando47
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« Reply #3 on: July 26, 2009, 04:11:53 PM »

Thanks for your greetings and responses!  She's been trying the water pills since Tuesday I believe... it almost seems like they're making the head hurt more.  Did that happen with your daughter's experience, Natalie?  Or was it just consistent for those ten days and then started to improve? 

Thanks!
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TRINITY1
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« Reply #4 on: July 26, 2009, 08:56:37 PM »

Hi Charlie

My daughter was put on Acetazolamide after her 2nd LP with opening pressure of 31.  She was complaining of headaches, dizziness and nausea mainly at night really badly for the first week or so and then things seem to settle down.  I wouldn't say she was worse than before LP or that meds made it worse. Just took a while to  kick in.

I have nooooo idea about shunts I'm afraid! It could be a whole different story.
I have read that a lot of peeps on here drink caffeine drinks for low pressure headaches, but I wouldn't do anything without professional medical advice.

Maybe you should contact her Neuros secretary and try and get a phone consult or appt if the pain is getting worse?

 Smiley: hugs
Natalie
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crando47
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« Reply #5 on: July 29, 2009, 04:03:13 AM »

She's actually attempted many times over the last few months to communicate her concerns to the neurosurgeon... his response to her is that birth control has no impact on IIH and to take her concerns to her neuro.  Considering that her troubles with IIH started right after she first started taking birth control, got much worse the second time, and now it seems like when she's not on the birth control, she doesn't have enough CSF... yeah, it seems pretty clear that for her, at least, birth control has a major impact on her CSF levels.

My theory (based on what she's experiencing now and what she's experienced in the past) is that her shunt is actually overdraining, so when she doesn't take the birth control, she gets spinal headaches.  When she does take the birth control, it causes the same overproduction or lack of proper drainage that it's caused in the past, and that results in her having headaches from too much pressure.  Does anyone here have any experience with shunts that are overdraining and what that might feel like?  Thanks!
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TRINITY1
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« Reply #6 on: July 29, 2009, 11:53:04 AM »

Hi Charlie

I am sorry that your friend is having such a hard time. I can not be of much help to you as I really know nothing about the subject.  All I can suggest are the following links:

This board on the forum has lots of accounts from people and their problems, experience of VP shunts. It might be worth reading some of them or asking if they could help?

http://www.iihsupport.org/index.php?board=40.0

This is the Intracranial Hypertension Reasrearch Foundation who are a very knowlegable re all IIH and treatment aspects and you can contact them for advise via email. They usually get back to you within a day or 2.

http://www.ihrfoundation.org/intracranial/hypertension/info/C9

On this site you will be able to find your local PALS who may be able to advise you on how to go about getting a second opinion if your friend is very unhappy with her current Neuros. They are a great resource for all patieints and really do want to help!

http://www.pals.nhs.uk/

Hope this helps
Natalie
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x Shelly x
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« Reply #7 on: July 29, 2009, 07:52:22 PM »

  Does anyone here have any experience with shunts that are overdraining and what that might feel like?  Thanks!

With overdraining shunts you usually get low pressure headaches.  If your friends headaches ease when lying down you can be pretty sure it is low CSF pressure causing it.

I'm not sure why her neuro surgeon would say that birth control has no impact on IH as it has been found to cause IH, and people who suffer with IH should not take it as it is known to make IH symptoms worse..   Well there is one type you can take but I forget what it is. lol  If you use the search box or maybe look on the womens boards there are lots of discussions about it. 
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Posts by members, moderators and admins are not considered medical advice and no guarantee is made against accuracy. Please see your doctor before taking advice found on the internet.
didles
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« Reply #8 on: July 30, 2009, 04:39:13 AM »

Hi there and welcome,

I second what Katies mum is saying with my experiences if my shunt is blocked I have to sit upright. If my shunt is over draining I have to stay lying flat. Birth control is an issue with IIH as well as some other medications. I really think your friend has to see her doctor or find one that is willing to help.
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Lyn
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« Reply #9 on: August 03, 2009, 08:55:39 PM »

Charlie

I agree with what Michelle says people with IIH should not be taking contraceptives as they can increase the pressure. I find the surgeons response strange I have never been told different settings may result in additional problems, the VP shunt I have was originally installed at a setting of 1.5 - middle setting (altho it moved up to 2 on its own as it hadn't been fixed properly in surgery), I have subsequently had it lowered to now it's lowest setting which is 0.5 which for me till gives a pressure too high and I am currently waiting for see what they will do next! My surgeon was happy for me to have the shunt adjusted as I requested on the condition that if I started getting low pressure I could go back to have it adjusted straight away. We are all different so to keep your friend on an average pressure seems a little unfair, I would suggest she speaks to the surgeon again.

Lyn
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glowkeeper
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« Reply #10 on: October 03, 2009, 03:12:36 PM »

When my daughter was first fitted with a shunt she had the pressure set too low, and was vomiting quite regularly. She was too young to tell us if she was suffering from headaches too - but she was certainly disliking sunlight, so my guess is she was. She improved IMMEDIATELY the moment her shunt was adjusted upward by her neurosurgeon.....
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Nigel
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« Reply #11 on: October 03, 2009, 10:43:47 PM »

Charlie,

My shunt regularly overdrains - and lying flat is best.

A low pressure headache tends to feel like a very bad hangover.  It's very different from a high pressure headache when it feels like your head is about to explode, and with me the outside corners of the eye are extremely painful.

Nigel
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