I guess that is why I am so confused. My doctor alluded to the fact
that my chiara probably caused the syrinx. But since I had
decompression surgery in 2001, after the chiari formed and I was
collapsing quite frequently. If I have already had the surgery what can
they do for me now? I probably should have waited until I saw the
neurosurgeon...but it's going to be a while before I get in to see him
and as everyone knows the waiting is often times the worst part. I was
diagnosed in 1997 and since then it seems like a never ending battle.
PTC has caused so many problems and it is very frustrating. I am a
mother with 4 children. All I want is to be healthy, pain free
and "normal" - whatever that is! I know we all have these days....the
days where we can't remember what it felt like NOT to have a headache.
A day when we don't have some kind of pain or symptom related to PTC. I
guess I am really having one of those days. In 12 years I have tried so
hard to put on a happy face and be strong for everyone....but when is
it my turn to just forget about all of this. I just wish I could wake
up tomorrow and not be in pain!

Janine,
I already had the decompression surgery - it actually was one of the
easiest surgeries I have had. So I am worried that since I already have
had that surgery - what can they do for the syrinx? I have a strong
feeling that they may need to do a VP shunt! My LP shunt seems to be
working correctly now (after 3 valve changes). I read somewhere that
for the syrinx they can add a shunt to that also - I wonder if it could
drain through the same valve. I guess I am full of questions - but
waiting for over a month to see a neurosurgeon is giving my mond too
much time to wander!

Hi group, I haven't posted in a while but I wanted to ask if anyone has
ever developed a syrinx in their spinal cord? I just found out
yesterday that I have one that runs from C6-C7-T1. They haven't
determined if it's a tumor or just a fluid sack yet. The neurologist
thinks I may have developed it after I got the chiari from having the
LP shunt. Who knows. At this point I have had over 10 surgeries since i
was diagnosed in 1997. I had never heard of a syrinx and I was just
hoping someone could ease my nerves about having another surgery on my
spine...Thanks, Crystal

My advice is to make an appointment with your neuro asap, so they can
follow you closely, and they can work with your obstetrician as well.
If you have to change OB doctor to get one who is more experienced,
then do so. My last pregnancy was difficult, but I made it to 35
weeks with close monitoring and great caring staff of doctors. My son
was born healthy and tiny-18 inches and 5 pounds 12 oz. He was my
first C-section, which was necessary. I did have difficulty with
severe headaches and nausea, but it was worth the wait. My son is 4
years old now, and very healthy. If you have any questions, this is
the place to be!


--- In ptc@yahoogroups.com, KATHY GEOGHEGAN <geoghegan79@...> wrote:
>
> Hi,
> I've just found out i'm pregnant i'm still very early just 7
weeks...but i'm concerned about how this will affect my symptoms..i
have intracranial hypertension for over 5 years and last feb i had
cerebullar decommpression surgery to correct an arnold chiari
malformation which was linked to the IH. since my surgery i have been
getting better and better i am only on pain relief and nausea
meds...no more diamox!!!
> Now i have had to come off all medication because of the pregnancy
and i'm scared about how the pregnancy is going to affect my head and
symptoms and also if my illness could affect the baby..
> I'm not due to see my neurologist or neurosurgeon until may..
> Has anyone been pregnant while ill?does anyone have any suggestions
or advice?
> Any input is greatly appreciated..
> thank you for taking time to read this..
> Kathy..Ireland
>
> --- On Mon, 19/1/09, Daniel Mcneill <de_mcneill@...> wrote:
> From: Daniel Mcneill <de_mcneill@...>
> Subject: Re: [ptc] Re: Pain following lumbar puncture
> To: ptc@yahoogroups.com
> Date: Monday, 19 January, 2009, 10:36 PM
>
>
>
>
>
>
>
>
>
>
>
>             Hi Sorry to just be chiming in on this topic - however,
I also get severe lower back pain - in the exact areas of the LP's
and then spreading outward from there - the neurologist and
neurosurgeon both say it is from scar tissue build up from the
punctures - so the idea that when the pain is high when the pressure
is up makes perfect sense to me - there are some days when it doesn't
bother me much - on a scale of 1-10 I could be at a 2 and then other
days the pain is more of a 8 - it is usually worse in the middle of
the night or when I try to get up in the morning - some mornings I
have to have help getting out of bed the pain is so bad. I take
xanaflex for this - it was explained to me as a muscle relaxant
targeted specifically for spinal/back pain - and it does wonders most
of the time -
>  although it does have a tendency to make me extremely drowsy -
> Denia/Texas
>
>
>
>
>
> From: tecjb <tecjb@...>
> To: ptc@yahoogroups. com
> Sent: Saturday, January 3, 2009 12:15:07 PM
> Subject: [ptc] Re: Pain following lumbar puncture
>
>
>
> Freeda, your story reminded me about my boys who have PTC. The
> oldest (that's had the 18 surgeries, and tons of LP's) has
> a "weakness" in his lower spine, although... so does my younger
(who
> has had no surgery and just about 3 LP's). It's funny- when the
> pressure is super high or the older one's shunt isn't working- they
> always complain about lower back pain. I wonder if it's a "weaker"
> area since the LP's- and that causes them to have pain with the
> increase in pressure. That's one way I know that the pressure is
> increased- also seems to be worse when they are sick- with the
> coughing and all.
>
> My youngest has started complaining of vision problems over this
> break. I've not taken him to a neuro-opthal. since I spend my life
> living in and out of the hospital and docs. with my older- and
> neither one have had vision problems- so it's now to the doc. with
> him- either it's too many video games and
>  it's affecting his eyes, or
> it's papilledema. I'm praying for the first.
>
> Hope your daughter is doing better now Sheryl- all my best!
>
> Leslie
>
> --- In ptc@yahoogroups. com, Freeda Curlee <angelicambiance@ ...>
wrote:
> >
> > Hi Sheryl:
> >   I pray that your daughter is feeling better...I was diagnosed
in
> 2005, with PTC...
> >
> >   After about 8 to 10 Lumbar Punctures, I was told that my fluid
> was under control...This was almost a year later...However, as soon
> as I was celebrating, what I thought of as a victory,...I started
> having problems...
> >
> >    By later SUMMER of 2006, I started having the lower back
pain in
> the area where I had the LP,...the last Lumbar Puncture seemed more
> painful...Weeks later, I was having severe leg pain, severe
>  back
> pain,...Weeks after these symptoms...I was falling down, having
what
> seemed like convulsions, delayed speech...
> >
> >     I also developed head and neck tremors, a continuation of
> BALANCE and COORDINATION PROBLEMS, that were very severe,...And I
> spent TWO YEARS trying to get the help I need....I lost my teaching
> job....in Fall of 2006. I am still looking for work and trying to
> start a new life...I have learned that I must fight the good fight
of
> faith...
> >
> >     Not one Neurologist, seemed to link these problems to my
PTC or
> to a possible Faulty Lumbar Puncture...I have had to let go of the
> bitterness so that I can move on in life...I know that getting
> medical help always means that there is a chance of side effects or
> something going wrong...
> >
> >     I was recently diagnosed with Fibromyalgia for all of these
>
> problems...I am not really convinced that this is a proper
> diagnosis... These symptoms come and go...from weeks to
months...One
> day or for weeks or for months, I am at least 85% okay, then I have
> those relapses.Life has never been the same for me, since I had all
> of those lumbar punctures.
> >
> >     However, we all do what we have to do to get the help we
> need...I pray that all is well with your daughter...I do know that
we
> all have different symptoms...However, when we sign papers to
consent
> for Lumbar Punctures, those papers let us know that many terrible
> things could result after a doctor has done such a procedure...
> >
> >     It just seems like a person would have to  be completely
> paralyzed before anyone would say that it was related to the lumbar
> puncture....
> >
> >     When I bend down or over to do something or pick up
>  something,
> I sometimes get severe pain running from my waist to my legs to my
> feet, with numbness and tingling...Other times, it literally feels
> like I am going paralyzed in my legs and feet...At this point, more
> of my confidence is in the Lord, in the God that sent me to my eye
> doctor when no one else believed anyone was wrong, before I was
ever
> diagnosed with PTC.
> >
> >    One thing I found, was that, my Health Insurance and going
to
> all of the doctors was no good, if God did not allow it to be
> revealed...In time, I finally got diagnosed with this terrible
> disease...Mystery Diagnosis, a show on cable, about people who have
> gone through hell to get a proper diagnosis, actually helped me to
> understand how doctors screw up so many times...This show has been
> encouraging and is a big eye opener...
> >
> >    Happy New Year...If you ever feel you need a second or third
>
> opinion...Go for it...I wish I had children...What a blessing!
> >
> > Love,
> > Freeda
> >
> > --- On Fri, 1/2/09, sheryl.busch <SherylRB@ .> wrote:
> > From: sheryl.busch <SherylRB@ .>
> > Subject: [ptc] Pain following lumbar puncture
> > To: ptc@yahoogroups. com
> > Date: Friday, January 2, 2009, 2:14 PM
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > My daughter had a very bad lumbar puncture on Monday
> that lasted two
> >
> > hours, even though it was done under fluoroscopy (sp?). She said
> that
> >
> > during the procedure she was getting electrical shocks from her
> back to
> >
> > her feet, but the doctor wouldn't stop. Since then, she's getting
> >
> > severe pain from her
>  head to her toe, and it hits her like a ton of
> >
> > bricks. It's almost like a convulsion.. .she's been asleep while
I
> held
> >
> > her hand, and she grips down on my hand like a vice and her whole
> body
> >
> > tightens up. I explained this to her neurologist, who tells me
> this
> >
> > couldn't be from the puncture. I have my doubts. Has anyone else
> had
> >
> > a similar experience? It seems that she may have some nerve
damage
> >
> > from the puncture...the radiologist poked her over and over
trying
> to
> >
> > get fluid.
> >
> > Help!
> >
>

Sheryl,

There are three ways to monitor ICP and three accepted generalized ways to do
this.

There is the intraventricular ICP monitor that is placed into a ventrical. There
is the subarachnoid that is placed into the skull between the skull and the
brain itself, and there is the subdural which can be placed either in the spinal
column or into a subdural space in the skull.

The three accepted ways of getting the ICP information from one of these areas
is: 1) by a catheter/tube that shows the ICP but cannot drain CSF and/or blood,
2) by a catheter/tube that shows the ICP and can also drain CSF and/or blood to
regulate ICP, and 3) a sensor that tracks ICP through fiberoptics - but does not
have a way to drain CSF and/or blood.

Usually the type of monitor depends on the patient's condition, what
institution it's being monitored at and what the physician and nursing staff
are trained in.

Most places use skull/brain based ICP for young children and give them some kind
of paralytic or drug to calm them down. In older children and adults who are not
in a near comatose state or who aren't mentally altered and trying to rip
everything out, they will generally attempt to use the spinal ICP monitor. Of
course, this again depends on the facility.

There are also differences in ICP monitors due to technologic advances, too.
There are ICP monitors that have no wires or tubes and simply transmit
information wirelessly to a monitor and the information is tracked continuously,
and there are monitors that are hooked up to a machine that tracks the ICP, and
then there are manually read monitors that aren't hooked up to anything, or
to tubes.

If you are going to consider ICP monitoring for your daughter you should
definitely discuss this with the neurosurgeon, neurologist and neuro-radiologist
(if one is involved) so you can be aware of the procedure and perhaps choose a
procedure that will suit her best. If they are going to do it, might I suggest
doing a drain trial at the same time, so they will be able to tell if a shunt
would be benefical to her?

Best of luck and prayers to you and your daughter!

Ocean

SherylRB@... wrote:
>  How is ICP monitoring done if you don't already have a shunt?  Is
> there some device they can use that is external to the body, or does this
> involve an invasive procedure requiring general anesthesia or an actual
> shunt?  (We're trying to decide if my daughter needs a shunt, but she's
> never had ICP monitoring done to see how high the pressure gets at times.)
>  Sheryl
>   
>  In a message dated 1/10/2009 9:43:04 P.M. Pacific Standard Time,
> omcintyre@yahoo. com writes:
>   It's interesting that your daughter also has paralysis. When I have
>   my seizures (especially when my pressure is very high) I have paralysis,
too.
>   Frequently I "wake up" from the seizure and I'm
>   unable to move, speak, pretty much anything. I know some of it is the
>   post-ictal phase of a seizure, but paralysis is not common in post-ictyl
>   stage. My neurologist has told me (and my other doctors) that he's
>   going to monitor me for a while about the seizures, to see if they are due
to
>   ICP spikes or the brain damage (widespread cerebral atrophy) from
longstanding
>   high ICP. He's leaning towards ICP spikes, even though my
>   neuro-radiologist and neurosurgeons believe it is due to the atrophy and is
>   made worse by ICP spikes. Maybe it's time for an ICP
>   monitoring study for your daughter? Best of luck! And it would be nice
>   if folks who are studying and treating IH/PTC and the IHRF would start
>   ackowledging that very high sustained and spiking ICP can cause seizures in
IH
>   patients. *hugs* Ocean cisternal VA shunt - 12/18/08 @ age
>   34 diagnosed - 03/23/07 @ age 32 first symptoms - age 6 8 yr old
>   daughter, half-brother and mother with IH sue wrote: > My
>   daughter has had seizures every since she was diagnosed with PTC.... >
>   and they are some pretty strong seizures.... Not to scare you .. but on
>   > Christmas night she had a very long one.. and then the next morning
>   she > awoke parallyzed.. . on the right side.. spent 3 days in the
>   hospital... > with the only explaination. . is it is from the
>   seizures.. so she is > working trying to get the reuse of her arm and
>   leg... but as the > headache continues to hurt... the seizures also
>   continue.. and all the > ground she has gained is lost.. and she has to
>   start all over working > at getting her arm and leg moving again.... It
>   is terrible to watch her > seizure and go thru this... but it
>   happens... and we are very > supportive of her > Sue > --
>   In ptc@yahoogroups. com , jwtooblsd blessed <jwtooblsd@. ..> wrote:
>   >> >> Good Sunday Afternoon, >>  
>   >>     I was wondering if anyone with PTC ever had a
>   seizure?  I had my > second one yesterday while my hubby was
>   driving. My 1st one was a lil > over 2yrs ago after taking some new
>   steroids. For the past month, I > have been on over-the-counter cold
>   meds and maybe it doesn't mix w/ all > my PTC meds. Any ideas?
>   >>   >> Janine/Tx >> >
>  A Good Credit Score is 700 or Above.  See yours in just 2 easy steps!
>

Sheryl they put in an icp monitor in the OR under general anesthesia-
but it's a quick procedure (and my boys ALWAYS get relief from just
opening that space).  The first time they took off a tiny bit of hair
with it.  When it comes out I believe most of the time they don't
even stitch the hole- I think once he had to have it stitched.

The thing about the monitor is that there isn't any "print-out" that
the doctor can get off of it.  It can get a "general pressure level"
but the last time we did it the docs. wanted me to keep an hourly
journal of the pressure and symptoms level of pain.  That will at
least give them an idea of what's going on inside their head.

Hope that helps, and I hope she gets the help she needs!

Leslie




--- In ptc@yahoogroups.com, SherylRB@... wrote:
>
> How is ICP monitoring done if you don't already have a shunt?  Is
there some
> device they can use that is external to the body, or does this
involve an
> invasive procedure requiring general anesthesia or an actual
shunt?  (We're
> trying to decide if my daughter needs a shunt, but she's  never had
ICP
> monitoring done to see how high the pressure gets at times.)
> Sheryl
>
>
> In a message dated 1/10/2009 9:43:04 P.M. Pacific Standard Time,
> omcintyre@... writes:
>
>
>
>
> It's interesting that your daughter also has paralysis. When I
have  my
> seizures (especially when my pressure is very high) I have
paralysis, too.
> Frequently I "wake up" from the seizure and I'm
unable to move,
> speak, pretty much anything. I know some of it is the  post-ictal
phase of a
> seizure, but paralysis is not common in post-ictyl  stage. My
neurologist has
> told me (and my other doctors) that he's  going to monitor me
for a while
> about the seizures, to see if they are due to  ICP spikes or the
brain damage
> (widespread cerebral atrophy) from longstanding  high ICP. He's
leaning
> towards ICP spikes, even though my  neuro-radiologist and
neurosurgeons believe it
> is due to the atrophy and is  made worse by ICP spikes.
>
> Maybe it's time for an ICP  monitoring study for your daughter?
>
> Best of luck! And it would be nice  if folks who are studying and
treating
> IH/PTC and the IHRF would start  ackowledging that very high
sustained and
> spiking ICP can cause seizures in IH  patients.
>
> *hugs*
>
> Ocean
> cisternal VA shunt - 12/18/08 @ age  34
> diagnosed - 03/23/07 @ age 32
> first symptoms - age 6
> 8 yr old  daughter, half-brother and mother with IH
>
> sue wrote:
> > My  daughter has had seizures every since she was diagnosed with
PTC....
> >  and they are some pretty strong seizures.... Not to scare you ..
but on
> > Christmas night she had a very long one.. and then the next
morning  she
> > awoke parallyzed.. . on the right side.. spent 3 days in the
hospital...
> > with the only explaination. . is it is from the  seizures.. so
she is
> > working trying to get the reuse of her arm and  leg... but as the
> > headache continues to hurt... the seizures also  continue.. and
all the
> > ground she has gained is lost.. and she has to  start all over
working
> > at getting her arm and leg moving again.... It  is terrible to
watch her
> > seizure and go thru this... but it  happens... and we are very
> > supportive of her
> > Sue
> > --  In ptc@yahoogroups. com , jwtooblsd blessed <jwtooblsd@ ..>
wrote:
> >>
> >> Good Sunday Afternoon,
> >>
> >>     I was wondering if anyone with PTC ever had a  seizure?  I
had my
> > second one yesterday while my hubby was  driving. My 1st one was
a lil
> > over 2yrs ago after taking some new  steroids. For the past
month, I
> > have been on over-the-counter cold  meds and maybe it doesn't mix
w/ all
> > my PTC meds. Any ideas?
> >>
> >> Janine/Tx
> >>
> >
>
>
>
>
> **************A Good Credit Score is 700 or Above. See yours in
just 2 easy
> steps!
> (http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?
redir=http://www.freecreditreport.com/pm/default.aspx?sc=668072%
26hmpgID=62%26bcd=De
> cemailfooterNO62)
>

It's interesting that your daughter also has paralysis. When I have my
seizures (especially when my pressure is very high) I have paralysis, too.
Frequently I "wake up" from the seizure and I'm unable to move,
speak, pretty much anything. I know some of it is the post-ictal phase of a
seizure, but paralysis is not common in post-ictyl stage. My neurologist has
told me (and my other doctors) that he's going to monitor me for a while
about the seizures, to see if they are due to ICP spikes or the brain damage
(widespread cerebral atrophy) from longstanding high ICP. He's leaning
towards ICP spikes, even though my neuro-radiologist and neurosurgeons believe
it is due to the atrophy and is made worse by ICP spikes.

Maybe it's time for an ICP monitoring study for your daughter?

Best of luck! And it would be nice if folks who are studying and treating IH/PTC
and the IHRF would start ackowledging that very high sustained and spiking ICP
can cause seizures in IH patients.

*hugs*

Ocean
cisternal VA shunt - 12/18/08 @ age 34
diagnosed - 03/23/07 @ age 32
first symptoms - age 6
8 yr old daughter, half-brother and mother with IH

sue wrote:
>             My daughter has had seizures every since she was diagnosed with
PTC....
> and they are some pretty strong seizures.... Not to scare you .. but on
> Christmas night she had a very long one.. and then the next morning she
> awoke parallyzed.. . on the right side.. spent 3 days in the hospital...
> with the only explaination. . is it is from the seizures.. so she is
> working trying to get the reuse of her arm and leg... but as the
> headache continues to hurt... the seizures also continue.. and all the
> ground she has gained is lost.. and she has to start all over working
> at getting her arm and leg moving again.... It is terrible to watch her
> seizure and go thru this... but it happens... and we are very
> supportive of her
> Sue
> -- In ptc@yahoogroups. com , jwtooblsd blessed <jwtooblsd@. ..> wrote:
>>
>> Good Sunday Afternoon,
>>  
>>     I was wondering if anyone with PTC ever had a seizure?  I had my
> second one yesterday while my hubby was driving. My 1st one was a lil
> over 2yrs ago after taking some new steroids. For the past month, I
> have been on over-the-counter cold meds and maybe it doesn't mix w/ all
> my PTC meds. Any ideas?
>>  
>> Janine/Tx
>>
>

My daughter has had seizures every since she was diagnosed with PTC....
and they are some pretty strong seizures.... Not to scare you .. but on
Christmas night she had a very long one.. and then the next morning she
awoke parallyzed... on the right side.. spent 3 days in the hospital...
with the only explaination.. is it is from the seizures.. so she is
working trying to get the reuse of her arm and leg... but as the
headache continues to hurt... the seizures also continue.. and all the
ground she has gained is lost.. and she has to start all over working
at getting her arm and leg moving again.... It is terrible to watch her
seizure and go thru this... but it happens... and we are very
supportive of her

Sue


-- In ptc@yahoogroups.com, jwtooblsd blessed <jwtooblsd@...> wrote:
>
> Good Sunday Afternoon,
>  
>     I was wondering if anyone with PTC ever had a seizure?  I had my
second one yesterday while my hubby was driving. My 1st one was a lil
over 2yrs ago after taking some new steroids. For the past month, I
have been on over-the-counter cold meds and maybe it doesn't mix w/ all
my PTC meds. Any ideas?
>  
> Janine/Tx
>

Hey everyone. I was diagnosed about 8 or more years ago. I am married
and have no kids. Every doctor I have been to has told me to lose
weight, that the symptoms will get better. I have been on and off of
Diamox since diagnosed (the side effects of this drug sucks!). I'm
having a problem with keeping a job. Employers don't understand PTC
and the everyday effects it has on me. I applied for benefits about a
year ago and was denied. What do I do from here. Do I need a lawyer I
can't afford? Does anybody have any information that might help me?

In September my oldest son had a grand mal seizure.  We had just come
back from the store- and he was standing on the grass and just took a
few steps back and fell backwards.  My other son ran over to him and
told me to call 911 (which I had once I realized this wasn't a joke of
any kind).  Then a month or two later- he was going up the outside
stairs at his friends house- and fell backwards, hitting his head on
the concrete.  He didn't know what happened- it wasn't another grand
mal, but we know it was something.  I emailed the foundation and this
was the response (after looking into my question):

Your question about seizures was referred to IHRF from our IH Registry.

In idiopathic intracranial hypertension grand mal seizures are not part
of the picture except in cases where there may be an adverse reaction
to a VP shunt or medication, etc. However, in secondary intracranial
hypertension there may be seizures relating to the underlying cause
producing the intracranial hypertension such as meningitis or an
inflammatory process.

In any case, all seizures need to be investigated as to cause so be
sure to contact your son's doctors (and you are apparently doing that)
as there are many possible causes of seizures.
IHRF






--- In ptc@yahoogroups.com, jwtooblsd blessed <jwtooblsd@...> wrote:
>
> Good Sunday Afternoon,
>  
>     I was wondering if anyone with PTC ever had a seizure?  I had my
second one yesterday while my hubby was driving. My 1st one was a lil
over 2yrs ago after taking some new steroids. For the past month, I
have been on over-the-counter cold meds and maybe it doesn't mix w/ all
my PTC meds. Any ideas?
>  
> Janine/Tx
>

I'm sorry you had the seizures.

I've been having seizures for months now. They started out pretty rare (and
I didn't know they were seizures at the time) last January or February. They
became more frequent in October, and I have daily seizures now. Sometimes
several a day since around Thanksgiving.

My neurologist and neurosurgeon believe the seizures were caused by cerebral
atrophy (widespread moderate to severe) caused by the constant IH pressure. My
brain shrank more than an inch in size in about a year due to the atrophy, and
the brain biopsy showed it was caused by the pressure and not some underlying
disease process. Neurologist said that with the extensive damage to my brain I
will probably have seizures for the rest of my life.

When was the last time you had an MRI? Ever had an EEG? I think it's time
for both..

*hugs*

I know how scary it can be for you and those around you.

Best of luck! And please let us know how things go and what you find out.

Ocean

jwtooblsd blessed wrote:
>             Good Sunday Afternoon,
>   
>      I was wondering if anyone with PTC ever had a seizure?  I had my second
one yesterday while my hubby was driving. My 1st one was a lil over 2yrs ago
after taking some new steroids. For the past month, I have been on
over-the-counter cold meds and maybe it doesn't mix w/ all my PTC meds. Any
ideas?
>   
>  Janine/Tx
>