It is Important to be Informed about Possible Changes for Health Insurance in 2017

“Your Health Care in 2017:  What You Must Know” an in-depth article that appears in “Parade Magazine”dated December 28, 2016, written by Frank Lalli, provides a detailed account of important points regarding the health insurance industry — before and currently under the Affordable Care Act — including Medicare and Medicaid, and the important changes that could lie ahead in 2017.  

This well-researched article offers a great start for a reader to become informed on this subject which affects all Americans in one regard or another.  

Still Researching for More Hope for Tarlov Cyst Pain Relief

More hope for Tarlov Cyst Pain Relief is quite slow in coming; especially for those of us who live in areas like I do (NE Ohio) where there are no neurosurgeons or other doctors who can offer meaningful effective help, either through surgical means or medication for Tarlov Cyst Disease to cope before surgery.

Sharing below some results of my research.

A New Drug for Alzheimers and Chronic Pain

NeuroTherapia

My reply from the Cleveland Clinic Doctors, Joseph Foss and Mohamed Naguib, regarding their research for a new drug for Alzeheimers and Chronic Pain.

I am sharing my response from these two doctors that was sent to me on October 18, 2016 after writing to them about their research and explaining my situation being a symptomatic patient with Tarlov Cyst Disease; a patient symptomatic with pain.

While I am pleased to receive their reply, I am disheartened to learn that the doctors apparently have not studied Tarlov Cysts that were first discovered by Doctor Tarlov in 1938. :

Dear Ms. Ellis,

 “Thank you for your inquiry.  I am not familiar with Tarlov Cysts, though you have motivated me to look into them a bit more.
At this time we are still in safety testing which will take about a year. Once this is complete we will be starting research trials to look at whether the drug can safely be used for treatment. We anticipate these trials will be available at multiple sites around the country and that there will be different trials for specific problems like pain or dementia.
Please follow the news on our website http://www.neurotherapia.com where we will report our progress. We plan on adding an email notification system in the future and you will be able to sign up for updates at that time.”
Regards,
Joseph Foss, M.D.
Mohamed Naguib, M.D.
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Earlier this year I contacted the Genetic and Rare Diseases Information Center (GARD), and they did send me a nice lengthy response, however, when you boil it all down their last paragraph summed up the situation that still exists for me and others living in Ohio.:
“We are sorry we were not able to find a specialist in your area, but we hope the provided information and resources are helpful. We strongly recommend you discuss this information and your concerns with your doctor, specialist or other trusted medical professional.”
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So, this is a stay-tuned situation for those of trying different medications and even herbs and essential oils for some sort of pain relief in order to lead at least half-way normal lives.  Feeling at this point that a normal life; one that existed before these Tarlov cyst monsters took over, will never happen again unless more real hope comes and comes soon.

Tarlov Cyst Disease – Not so Rare After All

Untold numbers of people take opioid medications to control pain, real chronic pain. Yes, it does exist in so many forms. Why else would we call these drugs “Painkillers”?

Chronic physical pain can come from many sources and last a lifetime.

Citing one disease that can cause chronic pain for those who live in the shadows with it — Tarlov Cyst Disease that is symptomatic with pain.  It is a largely misunderstood disease, but one that is progressive and affects in a symptomatic form for so many who are struggling to find relief from pain that it causes unless or until doctors can get a better handle on how to successfully treat this disease that is often referred to in MRI reports as “incidental findings” and left at that for the patient to figure out on their own.

Doctors either tell the patient “they don’t cause pain” or “they rarely cause pain.” In order to determine if they cause pain, the patient can be told that nerve blocks have to be performed to determine if the Tarlov cysts are the reason for their pain. The problem is that “needles in the spine” often worsens a patients pain based on reports from so many who are members in several Tarlov Cyst Facebook Groups in America and in other countries.  They have joined these support groups to learn more about what they are living with and where they can go for meaningful help.

The Tarlov Cyst Facebook Pages have been of great help to me for learning what others are experiencing with this disease and the few, very few, doctors who have operated on Tarlov Cysts to not only bring relief from pain for a symptomatic patient, but just as importantly, to stop the erosive progression of the disease.

I would like to share a link to a foundation that is bringing greater awareness to Tarlov Cyst Disease. I have no connection to this foundation.  I do have Tarlov Cyst Disease, and it is symptomatic with me. 

Thank you. 

http://tarlovcystfoundation.org/about_us0.aspx

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Facebook Groups for Tarlov Cysts:

Tarlov Cyst Disease

Tarlov Cyst Disease Awareness

Life Before and After Tarlov Cyst Surgery

Tarlov Cysters

Tarlov Cyst Support

NE Ohio Tarlov Cyst Family

Tarlov Cyst Disease Education and Awareness Page

Tarlov Cyst Society of Canada Page

Websites:

National Institute of Neurological Disorders and Stroke

Wikipedia – Tarlov Cyst

Tarlov Cyst Disease Foundation

National Organization for Rare Disorders (NORD) – Tarlov Cysts

Rare Diseases – Tarlov Cysts

Yahoo Results for “Tarlov Images”

The Energy and Commerce Committee 21st Century Cures