Hey Denia and Martha,
I would really enjoy meeting u both. I am only about
45min from Hillsboro, actually we were at the outlet
mall 3 weeks ago. I know there was another lady that
was in the Fort Worth area because we were seeing the
same neurosurgeon, but can't remember her name. Denia,
I am sorry to hear about your mom. You both are in my
prayers. Ladies, just let me know when u want to get
together or a 3-way on the phone. Take care.
--- MarthaBlack <rusha@earthlink. net> wrote:

> Hello Denia,
>
> That sounds like a Wonderful Idea!!! I would
> enjoy meeting someone else that understands how I
> feel, and sure both you ladies would also. I am
> making this short, I've been home about an hour from
> my Neuro Op. and very tired.
>
> I will be saying a Pray for you and your Mother!!!
>
> GOD Bless you both,
> Martha, 52 Dallas TX
>
>
>
> Daniel Mcneill <de_mcneill@yahoo. com> wrote:
> Hello Martha,
> I live in Temple Texas and know that Janine is in
> Ft. Worth - perhaps sometime we could have a ptc
> gathering? Either in Ft. Worth or perhaps Hillsboro?
> Of course, right now my life is overwhelmed with
> breast cancer treatments and concern over my mother
> who is very ill - but it would be nice at some point
> to meet others nearby in the same situation - What
> do you think?
> Denia
>
>
> ----- Original Message ----
> From: softndark2 <rusha@earthlink. net>
> To: ptc@yahoogroups. com
> Sent: Wednesday, March 12, 2008 1:38:23 PM
> Subject: [ptc] Re: Intracranial Hypertension
> Registry for patients
>
> Hello Ralpha,
>
> Martha from Dallas 52, Thank You!!! For this
> information. I hope
> there will not be too much info to fill out in the
> packet that comes
> in the mail, as I have no family helping me. But see
> a HUGE Need in
> reporting my PTC.
>
> Right now, I am at a OK time, with my PTC... except
> not being able to
> eat, or take my Potassium, and trying to catch up on
> all my affairs
> that have been neglected in the past 1 1/2yr. See my
> sergeon to
> remove my Goiter, while I am feeling a part of the
> human race <grin>
>
> I pray that you, and all the other's keep the
> faith!!! (Me
> included) I wonder if most of the list is feeling
> OK, at this time
> and catching up on life, like me OR GOD forbide,
> that none
> are "down with their PTC" right now?
>
> What ever your situation... . Hang in there, I
> remember when I only
> had enoungh energy to read my incoming group
> email...
>
> Bless You all,
> Thank's Ralpha, for the Registry Info.
> Martha 52, Dallas TX
>
> --- In ptc@yahoogroups. com, Ralpha <rstaeger@.. .>
> wrote:
> >
> > I thought you might like to know about this chance
> to make a
> difference.. .in your life and mine!!! Not enough is
> known by the
> medical community about the disorder we share...this
> will only change
> with research. This begins by collecting the medical
> records and
> imaging studies of patients like us. Please become a
> part of this
> important effort!
> > Ralpha
> >
> > Why Does Chronic Intracranial Hypertension (IH)
> Happen?
> > Why does it only affect some people and not
> others? Is IH genetic?
> What's the relationship between weight and
> intracranial hypertension?
> Are there medications I should avoid? Am I at a
> higher risk for other
> diseases or disorders? Will I lose my eyesight? Are
> there better
> treatments for intracranial hypertension? Why
> doesn't my doctor
> understand what's happening to me? When will I get
> better? Can they
> find a cure?
> >
> > If you've ever asked yourself these questions,
> then you know how
> difficult it is to struggle with intracranial
> hypertension. The
> answers can be found, with your help. The key is
> medical research,
> which is why the IH Registry was established. It is
> the first and
> only medical registry of its kind in the world
> today.
> >
> >
> > Why Your Participation Matters
> > A medical registry is a collection of medical data
> for a specific
> disease or disorder. Researchers use the information
> to study
> patients, learn about the disease/disorder and
> develop better
> treatment options. It is a vital tool in the search
> for a cure.
> >
> > Each person is important in the IH Registry
> because every medical
> history is unique and adds to our knowledge of
> intracranial
> hypertension.
> >
> >
> > Who Is Eligible
> > Any person with chronic intracranial hypertension
> documented by a
> physician is eligible to join the IH Registry. This
> includes people
> with idiopathic intracranial hypertension of unknown
> origin (also
> known as pseudotumor cerebri or benign intracranial
> hypertension) , as
> well as those with secondary intracranial
> hypertension due to an
> underlying medical condition or trigger. IH patients
> of any age, body
> type, gender or nationality are eligible to enroll.
> >
> > There is no cost to enroll in the IH Registry. The
> IH Registry is a
> joint project of the Intracranial Hypertension
> Research Foundation
> and Oregon Health & Science University and fully
> complies with
> federal HIPAA privacy regulations.
> >
> >
> > Benefits to Enrolling
> > *Participate in the search for better treatments
> and a cure,
> including clinical trials
> > *Demonstrate that IH affects a significant number
> of individuals
> > *Expand knowledge about IH
> >
> >
> > To Enroll
> > To learn more about the IH Registry and receive an
> enrollment
> packet, you can contact the Registry directly
> through our website
> <http://www.ihrfound ation.org/ intracranial/
> hypertension/ info/C36>.
> You may also call the IH Registry office at
> 503.418.2141. Thank you
> for your interest and participation!
> >
>
>
>
>
>
>
>
>
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>
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>

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