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steve.taranovich
steve.taranovich
12/13/2016 1:44:10 PM
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Blogger
Re: Medical Electronics Imaging Innovation needed to relieve sufferers of Cerebral Spinal Fluid leaks
Thanks Antedeluvian! I am taking up the issue with Aspencore IT regarding links.

We are in the process of deleting all the SPAM on Planet Analog---not sure where that came from or why it was done

 

Aspencore IT will be taking over duties like this shortly---we are still in transition right now until 2017, when all will be brought over from UBM to Aspencore---it's a monumental task, but I appreciate your frustration---thanks for staying with us---better things are coming in 2017!

 

 

 

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steve.taranovich
steve.taranovich
12/13/2016 1:32:41 PM
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Blogger
Re: Medical Electronics Imaging Innovation needed to relieve sufferers of Cerebral Spinal Fluid leaks
Here is the link to my EDN article http://www.edn.com/design/analog/4443157/Medical-electronics-imaging-to-aid-sufferers-of-cerebral-spinal-fluid-leaks

 

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antedeluvian
antedeluvian
12/13/2016 11:47:16 AM
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Blogger
Re: Medical Electronics Imaging Innovation needed to relieve sufferers of Cerebral Spinal Fluid leaks
Bob

Steve has done an excellent follow up article:

"Medical Electronics Imaging Innovation needed to relieve sufferers of Cerebral Spinal Fluid leaks and save lives"

at edn dot com . 

Sadly the commenting system here won't allow the link to the article.

 

Unfortunately spamming in the distant past resulted in this limitation, which is waived for bloggers. I added the link.

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bpaddock
bpaddock
12/13/2016 8:27:10 AM
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Teacher
Medical Electronics Imaging Innovation needed to relieve sufferers of Cerebral Spinal Fluid leaks
Steve has done an excellent follow up article:

"Medical Electronics Imaging Innovation needed to relieve sufferers of Cerebral Spinal Fluid leaks and save lives"

at edn dot com . 

Sadly the commenting system here won't allow the link to the article.

 

 

 

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Elky
Elky
11/23/2016 2:20:21 PM
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Newbie
Re: Both Elevated and Low Intracranial Pressure Deadly
Hi Robert, I am looking for your contact information but cannot find an email address? I looked on Karen's journal as well. I commented above about my own life with daily low pressure headaches. Please feel free to contact me at lyn.hunter@rogers.com if my story (summarized above) could be of any help. 
Best regards, Lynda Hunter

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Elky
Elky
11/23/2016 2:13:27 PM
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Newbie
Re: Both Elevated and Low Intracranial Pressure Deadly
Hello,

I wanted to add my condolences to Robert and my biggest of empathy as I too have been suffering from low pressure headaches since April 6, 2008.  I have been suffering for 8.5 years with daily debilitating head pain after I had a spinal tap go wrong on April 6, 2008.

It left me with a massive leak and I had a blood patch done 4 days later - but the patch didn't hold and ever since then I have had the same pain and the same symptoms *every* day for over eight years.  Despite this, I have yet to have a doctor definitively give the ongoing diganosis of low pressure headache due to CSF leak simply because they don't see it on regular MRI.

I have been trying to get to see Dr Schievink in LA for over 2 years but cannot afford it, no doctor in my city beyond my pain doctor even believes that an ongoing low pressure headache is even real!  It has negatively affected my entire family, I have 2 children who were just 2 and 6 when this happened, it has lead to a separation from my husband, distance between me and my family simply because I cannot stand up long enough most days to get anywhere. I am on disability but barely scraping by. And now with changes to the way pain medication is being handled, my doctor is reducing my pain meds! The very thing that keeps me alive. I live in Ottawa Canada by the way.

I hope that you find my message and if I can be of *any* help to your research even if just anecdotally please contact me at lyn.hunter@rogers.com.

I understand Karen's position completely and I have great sympathy to you Robert for what you have endured at the hands of a CSF leak.

Best regards,
Lynda

 

 

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bpaddock
bpaddock
11/17/2016 4:08:28 PM
User Rank
Teacher
Re: Both Elevated and Low Intracranial Pressure Deadly
Thank you. My contact information can be found at kpaddock dot com .

"it's stories like Karen's told through their loved ones that fuel us to keep working year after year. "

I just completed filming six hours of Karen's story for the upcoming documentary Pandemic of Denial about Chronic Pain: pandemicofdenial dot com

Sadly not released to sometime early in 2018.

All of us are trying to raise awareness and find better solutions...

 

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jenblain
jenblain
11/17/2016 2:00:53 PM
User Rank
Newbie
Re: Both Elevated and Low Intracranial Pressure Deadly
Robert,

I wanted to offer my deepest condolences to you. I also wanted to let you know how very important it is for you to share Karen's story with medical researchers. We need to understand more than just the science and equations behind our work; it's stories like Karen's told through their loved ones that fuel us to keep working year after year. I will be sharing the links you have provided to all the students in my course on biomedical technology. Thank you so much for sharing your story, and I will be sure to keep your contact information at hand. Right now we are still early in the research, but I would love to get in touch with you once we are close to piloting a human study.

 

Sincerely,

Jennifer Blain Christen

 

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steve.taranovich
steve.taranovich
11/17/2016 12:09:25 AM
User Rank
Blogger
Re: Both Elevated and Low Intracranial Pressure Deadly
Hi Robert,

I am so sorry for your loss.

Thank you for alerting me to NASA's development of a non-invasive pressure monitor via the tympanic membrane. I will definitely investigate this further with them. I will also investigate ideas at the Spinal CSF Leak Foundation.

I will also alert the ASU development team about your comments.

I will be in touch. Please send me your contact information.

My e-mail is steve.taranovich@aspencore.com

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bpaddock
bpaddock
11/16/2016 9:13:04 AM
User Rank
Teacher
Both Elevated and Low Intracranial Pressure Deadly
My late wife Karen committed suicide on August 7th 2013, as she could no longer stand the excruciating headache caused by Intracranial Hypotension due to Cerebrospinal Fluid (CSF) Leaks. A condition that is more common that many think (for example Actor George Clooney had/has a CSF Leak and considered suicide), yet is so unknown that some doctors argue the condition does not even exist.

If you want to understand the reality of this disease please read Karen's Journal, that is now required reading at Duke School of Medicine.

"Karen's first-hand account of her illness gave an honest, heart-wrenching depiction of what it is like to live with debilitating pain day-to-day." - Cover story of the local news paper from kpaddock dot org .

Any early draft of her book may be found at kpaddock dot com .

NASA, as part of the Mars Mission planing, is working on a non-invasive pressure monitor via the tympanic membrane.

A lot more work needs done on both invasive and non-invasive pressure monitoring as well as new imaging techniques for the spine as the current ones such as Digital Subtraction Myelography (DMS) fail to find CSF Leaks far to often. My hope is that millimeter wave imaging via metamaterials will bring T-Rays out of the lab, hopefully soon.

The Spinal CSF Leak Foundation at spinalcsfleak dot org has many resources available to learn more. If you want to see the day to day struggles of real sufferers from brain pressure issues look into the spinal-csf-leak support forum at inspire dot com .

If I may be of service in any way to anyone working in the field of Intracranial Pressure or advance imaging of the spine, with the information I'm collecting, please get in contact with me. - Robert Paddock

 

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