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  • Pseudo Tumor Cerebri (sp?)

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    Old 07-29-2004, 04:13 PM   #1
    Hopalong5us
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    Pseudo Tumor Cerebri (sp?)

    Help Please,

    My daughter is 22 years old and recently diagnosed with Pseudo Tumor Cerebri, about 5 months ago. Her pressures have been basically "off the scales". She has had 5 spinal taps and since July she has had 2 surgies to first implant a shunt and then to reposition the shunt after it moved. It has moved again and they want to do surgery again. Her doctor said he has had on person with 20 surgeries!!!!

    Does anyone know of this condition or a better way to remedy the situation my daughter and my wife and I are going through. The medical bills are in the thousands with nothing to look forward to except more surgies!

    HELP,

    Hoppy

     
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    Old 08-06-2004, 07:23 AM   #2
    PETALS
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    Wink Re: Pseudo Tumor Cerebri (sp?)

    Sorry To Hear About Your Daughter. Hope They Can Keep Her Surguries To A Minimum. I Really Don't Have Any Answers Reguarding The Illness, But Keep The Faith.
    Keep Us Posted,
    Petals

     
    Old 08-12-2004, 02:57 PM   #3
    head1
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    Re: Pseudo Tumor Cerebri (sp?)

    hi there,
    i have had ptc aka iih or bih (as it is know known) for over 2 years and im surprised that your daughter has had surgery so quickly.spinal taps not only measure the pressure but are theraputic too as they reduce the csf fluid.normally most specilaists will start patients off on a drug called diamox which helps the pressure and keep surgery as a last resort for when the drugs are not working any more and the eye sight is at risk.
    u dont mention wether your daughter has a vp or lp shunt and wether she has papildema (swelling of the optic nerves)mine took over a year to diagnose and is now permanently damaged.iih is a rare but hidden disabling disease and your daughter will need support,there r quite a few very good suport forums on the net that she could join which help with all the un answered questions that the specialists (who dont have a clue!!) cant answer,i know for myself they have been a life saver!

    as for the shunt,i would get straight on to the dr who did it and get them to sort it out asap as it must be uncomfortable it if has moved and question why no drugs first.

    good luck

     
    Old 08-13-2004, 02:02 PM   #4
    Hopalong5us
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    Re: Pseudo Tumor Cerebri (sp?)

    Head 1

    Thanks for the response... My daughter had 5 spinal taps and the neurologist did notice some damage to the optic nerve. We just got her home today from the hospital again! She had her 3rd surgery Wednesday night. The neurosurgeon took about 400 ml of cerebral spinal fluid out of her stomach. They replaced the drain back into her paratenial (SP?) area and tried to anchor it this time, I don't know how though.

    He shunt is in her side with the tube in her spine about 1/3 the way from the tailbone. The shunt drains into the paratenial area, when it is in there, it has been draining into her stomach mostly because it comes out of the paratanial area. I sure hope it works this time, she has gone through so much! Her bills have been needless to say in the thousands and we have had to remorgage our house.

    God help us,

    Hoppy

     
    Old 08-13-2004, 03:03 PM   #5
    head1
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    Re: Pseudo Tumor Cerebri (sp?)

    hi,oh it does sound as if shes been through the ringer!!
    by sounds she has a lp shunt,which is a lumber pereteneal shunt,which is attached to the lumbar and drains the fluid to the perteneal,the other is the (vp) ventricular peretinal which goes from the ventricular chambers in the brain and drains again to the pereteneal.cfs fluid can re produce about 40 minutes after a drain so dont be surprised at the amounts that drain,but do be warned about the amount of lumbar punctures as it has been known that repeated lp's can cause scar tissue and back problems,i always avert away if possible.
    has she seen a opthalmologist neurologist? as that is the specialist she should be under..not a neurologist as this condition is a eye/brain not just brain or eye condition.she should be having regular eye tests that will contain,henry fields tests,colour vision,pupil dilation ect.is the shunt containing her headaches and symptons or has she been given any drugs to control these?
    i would really question your doctor as to why he has put a shunt in so quickly when there are drugs that control iih as it is un heard of unless she had a threatening trauma!!! it all seems very costly and painful for your duaghter when there are other options.Has the dr explained the risks of blockages ect with shunts?
    if u type into a search engine either ptc (which is the old name) or idiopathic intracranial hypertension or benign intracranial hypertension there is plenty of info on the net to help ( all the same disease just different names)
    just shout if u want any more info and do join a support forum,they r great for info and help..best wishes xx

     
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