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angelisse-sophia
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PostSubject: need advice asap   Tue May 14, 2013 11:39 am

Hello... Im wondering if anyone can help... Iv had an overdraining lp shunt for 19 months now... All my lps have been 3.
At the moment im currently an inpatient with an icp bolt and my question is.... Whats classed as a 'low' reading???
When im layed flat it stays at 3/4....wen i sit up it goes to -4/-5.... And when i complletely stand iit varys between -5/-8...
Im sooo confuzed as my surgeon said thats not low enuff to do anything and that myshunt is NOT overdraining...

Is this correct or am ibeing fobbed off again????

Please help.......
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Heidi
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PostSubject: Re: need advice asap   Tue May 14, 2013 9:09 pm

I'm sorry for the delayed reply but I've been looking everywhere to find out what is classed as a low pressure reading, but am still none the wiser what it is I'm afraid. You can contact our Partners The Brain and Spine Foundation who are medical professional and will be able to answer this question for you.
The Helpline is open every weekday morning:

  • Monday to Thursday: 9am to 2pm
  • Fridays: 9am to 1pm
Call the nurses free on 0808 808 1000
I am so sorry I haven't been much help but I did my best to try and find out for you, but the measurements and information was out of my expertise I'm afraid.
Heidi
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Wylee
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PostSubject: Re: need advice asap   Wed May 15, 2013 1:17 am

My research shows that the "normal" range of CSF pressure is 10 to 20 cm. Anything below 5 is considered low and anything above 25 is high. The gray areas exist between 5 -10 and 20-25. Between those areas, manipulating the pressure, by adding or drawing off fluid and seeing if symptoms change is a better diagnostic tool.
It sounds like your surgeon is not on your side. Can you contact your neurologist or is there an advocate available at the hospital that you can contact? As the old saying goes, if it walks like a duck, quacks like a duck and looks like a duck, IT'S A DUCK!! Your numbers verify your symptoms. If you are not overdraining, maybe you have a leak. Either way, your CSF pressure is too low, in my humble opinion.
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medmisfit
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PostSubject: Re: need advice asap   Wed May 15, 2013 9:09 pm

I had this problem and suffered with low pressure symptoms for over 3 years because every time they did a spinal tap my opening pressure's were "normal". I honestly just kept going to different surgeons until I found someone that heard me. He told me they haven't used spinal taps for several years when suspect overdraining because the results are unreliable. They soley go by symptoms. Once they got in there they found my valve and catheter both needed to be replaced.

I would follow up with the Brain and Spine Foundation, then request a 2nd opinion.

Please keep us posted!
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Julie
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