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Thread: Lumbar Peritoneal Shunt

  1. #1
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    Default Lumbar Peritoneal Shunt

    Hi everyone --- Anyone who can help me sort out this medical conundrum ???

    I am back to this forum, after having been off for awhile. I really would appreciate input from my poor fellow sufferers!

    My history is a dural puncture from a cervical epidural in 2008. Six blood patches, recent fibrin glue patch, all with no relief from the multiple daily crushing headaches. The last LP in March indicated "questionable" high CSF, and my diagnosis changed from low spinal fluid to high. I've been on over 30 different meds over these 4 1/2 years, including the acetazolamide and many others, which did not help and my stomach could not tolerate anyway.
    As a background, I've never suffered headaches in my life, and these have put me on permanent disability. I get motion sickness easily, obviously limiting my formerly very active lifestyle!, and my only relief is lying down with a painkiller like Percocet or Fioricet. I can't imagine the havoc these drugs are wrecking on my liver, but I refuse to lie down and give in - I'm certain all of you feel the same way!

    I've gone thru P/T, M/T, chiro, acupuncture, botox, Prolotherapy, Occipital nerve blocks, Median branch nerve blocks, and seen every "ologist" but a proctologist!! I've flown to Duke in NC to consult Dr. Gray twice, and come back in the same shape as prior to her interventions, despite her hard work to help me.

    As Punctured indicated, the option left to me - other than a lifetime of pain meds - is a lumbar peritoneal shunt. My GP told me it's not a big deal, then my neuro told me to seriously consider before undergoing this extreme procedure! I'm ready to drill a hole in my own skull to relieve the pressure, so a shunt sounds very cool at this point.

    Anyone have any feedback for me? I would greatly appreciate it!
    Thank you ---
    Marianne

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    Community Member dagaz's Avatar
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    double post sorry
    Last edited by dagaz; 05-02-2013 at 11:16 PM.
    Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

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    Community Member dagaz's Avatar
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    I had one for two weeks I think... I couldn't stand up without switching it off. The pain was terrible however the lumbar shunt I had was to take pressure off of my surgery/leak sites which are/were cerebral. They drained quite a bit off. I'm sorry if you are talking about a permanent less invasive LP shunt. I wouldn't do it again. When you have to walk with your head parallel to the floor so you can get to the washroom it's not fun. I wouldn't do it again. I have a permanent Ventricular Peritoneal shunt and it is way better and I'm not in nearly the pain I was with the LP shunt. Think about it and get a second even third opinion before going ahead with this procedure.

    Dagaz
    Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

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    Dagaz --
    Thank you so much for your comments. I haven't rushed into anything during these past 4+ years, and after reading your note I definitely won't rush into this! I'm so sorry you had that experience, and hope you are feeling better with the VP shunt. Good luck.
    Marianne
    Last edited by paradice15; 05-13-2013 at 08:07 AM.

  5. #5
    Community Member dagaz's Avatar
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    what is your ICP? ( intracranial pressure?) I often wonder if our pressure raises because it is trying to equalize the ICP in the presence of a CSF leak and once the leak is healed the pressure doesn't go down. I have hydrocephalus after intraventricular hemorrhage. The only way of lowering high ICP is a shunt and most people with hydrocephalus have cranial VP shunts. If you go to the hydrocephalus forum you can get more information there. As I was saying at least with a ventricular peritoneal shunt (VP shunt) at least you can have a normal life...) I hope you have looked for the second opinion or at the very least have spoken with a hydrocephalus foundation. Hydrocephalus is abnormally high csf pressure... Good luck and please speak to another doctor about your situation...
    Dagaz.... (Connie)
    Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

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    Hi Dagaz --
    Thank you for your comments! I recently sought another opinion at Columbia Presbyterian Hospital, and met with a very thorough and inciteful neurologist. She is taking a different tack, since my ICP for both LPs was normal. I'll be weaning off the multiple daily pain killers, and going on a Depacon infusion next month to get me to a pain baseline. This physician's feeling is that 4 1/2 years on opiates, plus numerous insults to my neurotransmitters, may have caused a chronic migraine condition with no relationship to a CSF issue.

    I am willing to try anything to relieve the pressure, and may actually be on the incorrect forum for my situation! However, since all my doctors diagnosed CSF issues, I was just following their suggestions. I will continue my comments on a Chronic Pain Forum, and will also continue to pray that you and fellow sufferers find relief from your pain.

    Best regards,
    Marianne

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    Community Member dagaz's Avatar
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    Thank you and good luck... I hope they figure it out for you... however I have been on hydromorph contin 24mg bid...( 2 x per day) for 9 years and it hasn't brought on any mysterious head aches. I am happy that it doesn't seem to be CSF related...
    Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

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