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Intracranial Hypertension Registry for patients   Message List  
Reply | Forward Message #27916 of 28660 |
Re: [ptc] Re: Intracranial Hypertension Registry for patients

Hello Janine,

 

Yes, my Dr. is at www.utsourthwestern.edu/ophth .   I Love my Doctor, of course I feel he saved my life (smile).

 

John G McHenry
UT Southwestern Medical Center
5323 Harry Hines Blvd.
Dallas, TX 75390

 
214-645-2020
 
If you make an appointment you will talk to Jean...  tell her Martha Black, gave you McHenry's name.   I hope he is still taking new patients.
 
Good Health!!!!
 
 
"Worth my weight in Gold. . . "
 
Back-up Email...  
 
 
 


----- Original Message ----
From: jwtooblsd blessed <jwtooblsd@...>
To: ptc@yahoogroups.com
Sent: Wednesday, March 12, 2008 3:39:57 PM
Subject: Re: [ptc] Re: Intracranial Hypertension Registry for patients

Hello Martha, my name is Janine and I live in Fort
Worth. Are your physicians in Dallas? I am looking for
some second opinions regarding my vision.
--- softndark2 <rusha@earthlink. net> wrote:

> 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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Wed Mar 12, 2008 9:05 pm

softndark2
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Forward
Message #27916 of 28660 |
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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...
Ralpha
rstaeger
Offline Send Email
Mar 12, 2008
12:34 am

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...
softndark2
Offline Send Email
Mar 12, 2008
6:38 pm

Hello Martha, my name is Janine and I live in Fort Worth. Are your physicians in Dallas? I am looking for some second opinions regarding my vision. ... ...
jwtooblsd blessed
jwtooblsd
Offline Send Email
Mar 12, 2008
8:40 pm

Hi everyone! I went to the site via the link, but unfortunately wasn't able to submit my information to join the registry. I did call the phone number listed,...
Heather
badg00dgirl
Offline Send Email
Mar 13, 2008
7:47 pm

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...
Daniel Mcneill
DE_McNeill
Offline Send Email
Mar 14, 2008
6:28 pm

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...
MarthaBlack
softndark2
Offline Send Email
Mar 17, 2008
1:56 pm

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...
jwtooblsd blessed
jwtooblsd
Offline Send Email
Mar 18, 2008
12:50 pm

Hello Janine, Yes, my Dr. is at www.utsourthwestern.edu/ophth . I Love my Doctor, of course I feel he saved my life (smile). John G McHenry UT Southwestern...
MarthaBlack
softndark2
Offline Send Email
Mar 14, 2008
6:29 pm

My sister, Diana has PTC also. She lives in Corsicana,Tx, goes to the Dr. in Dallas too. She would love to be included in your get together if she is able. She...
Tina Rose
harrisfurnit...
Online Now Send Email
Mar 19, 2008
1:06 pm

Hi Tina, I would love to meet your sister - if you think she would feel up to joining us - the more the merrier! That would make at least 4 of us - now just to...
Daniel Mcneill
DE_McNeill
Offline Send Email
Apr 2, 2008
8:46 pm

Hi Martha, Thank you for your thoughts and prayers - sorry I have been out of touch for several days - my Mother passed away on the 17th and we were out there...
Daniel Mcneill
DE_McNeill
Offline Send Email
Apr 2, 2008
8:46 pm

Thank you. Just let me know when and where. Thanks, Tina ... From: Daniel Mcneill <de_mcneill@...> To: ptc@yahoogroups.com Sent: Wednesday, March 26,...
Tina Rose
harrisfurnit...
Online Now Send Email
Apr 3, 2008
5:47 pm

Well, i live in Longview. And I wouldn't mind driving out to visit if there were a few of us getting together. It would be nice to talk to someone who...
Ravenweed
l_ravenweed
Offline Send Email
Apr 4, 2008
12:35 pm

Hey y'all, I live north of Abilene and would love to try to get together with y'all at some point , if I am not intruding. I have had IH (hard not to say PTC...
Ldunn821@...
Send Email
Apr 8, 2008
4:15 am

Hi Lori, it would be nice for all of us Texans to get together. I had a VP shunt, but it was removed almost a year ago. I seem to be doing great w/o it. ... ...
jwtooblsd blessed
jwtooblsd
Offline Send Email
Apr 8, 2008
9:52 pm

Hi Lori, I grew up in Bronte and went to college in Abilene - how far are you from there? We probably just need to pick a weekend in June and - or whenever and...
Daniel Mcneill
DE_McNeill
Offline Send Email
Apr 9, 2008
1:17 am

Hello Everyone, Nice to be back on line, and check and see how ever one is doing. And glad I didn't miss the "Texas Get Together". I have been without my...
MarthaBlack
softndark2
Offline Send Email
Jun 17, 2008
1:26 pm

This is starting to sound, really exciting!!! I would like to let the group know: That I have not driven in years but use the "Dart Paratransit" service. I...
MarthaBlack
softndark2
Offline Send Email
Apr 11, 2008
12:52 pm

Hello Tina, Martha and everyone, Sorry I haven't been on in a little bit - My Mother passed away on the 17th of March and we have been taking care of things...
Daniel Mcneill
DE_McNeill
Offline Send Email
Apr 4, 2008
12:53 pm

Sorry to hear of your lose, I lost my mother in 2003 so I know it can be devastating.Yes, a saturday in may or june is fine with me. Tina ... From: Daniel...
Tina Rose
harrisfurnit...
Online Now Send Email
Apr 11, 2008
12:52 pm
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