Let’s keep the word “health” in Pre-Existing HEALTH Conditions!

Let’s think about Pre-existing HEALTH conditions!  Have you noticed lately many in the media and TV say or write:  “pre-existing conditions”?  I guess it is supposed to be silently understood that the word  “health” is implied in that statement; making it less important to actually keep the word “health” whenever references are made to this subject.  Let’s not leave it to individual interpretation if it is there or not; or if it is important to state it or not.

Like what has happened after the PPACA – Patient Protection and Affordable Care Act — the title/name  of  the program started to be more commonly known as the “ACA” — the change was to shorten it and make it easier to remember I suppose. It was also done to counter the fact that Republicans quite sarcastically called this 2010 law “Obamacare” — naming it after President Obama but with a negative stance about it; (which reminds me of a retina specialist I saw back in 2010 when I told him I had no health care insurance, and that I was waiting on the Ohio High Risk Pool to kick in for me to apply a few months later.  At the time, the high risk pools were called “the bridge to 2014” when the Patient Protection and Affordable Care Act plans in the Marketplace Exchanges would be available for everyone (not only children); and the retina specialist said with a smirk “oh you mean Obamacare?” and the tone of his voice told me he thought it was laughable;  and I just answered him “yes”.)

In reality “Obamacare” does not exist as it is not the official name of the Patient Protection and Affordable Care Act.  I feel the words “Patient Protection” are also quite important to keep and repeat because we seem to have lost sight of their being a huge part of the reason the law was enacted.  Protections that include from being denied health insurance altogether due to having pre-existing HEALTH conditions.

No one in Congress, nor the President or anyone in his administration, nor anyone sitting on the Supreme Court bench; nor their families, are having to go without health insurance due to having pre-existing health conditions.  So, it is not fair or just that any American citizen should have to be without health insurance due to having pre-existing health conditions in our  21st Century America.  I have the rejection letters from 2010 from four different health insurance companies to prove that it did happen before the Patient Protection and Affordable Care became law.

Furthermore, a person didn’t need to have a major life-threatening illness to be rejected for health insurance coverage either.  So, why are we shortening “pre-existing health conditions” to only “pre-existing conditions”?  Is it like we shortened the PPACA to ACA to make it easier to remember?  Or perhaps to take the main focus off of the meaning of the word “health“?  Only saying or writing “Pre-Existing Conditions”, unintentionally or otherwise, leaves out the important word “HEALTH“!

Health conditions that exist when a person tries to enroll in health insurance plans are what these insurance companies haven’t forgotten about, and certainly won’t if they are once again allowed to reject people for obtaining any health insurance coverage or charge them ridiculously high monthly premiums in order to cover those pre-existing health conditions.  The answers to the questions on the insurer’s enrollment forms are meant to reveal a full range of health conditions and they do.  The health insurance companies take note of them, tally them up, and deem the potential enrollee either acceptable for enrollment; or brand the person as being uninsurable and the rejection letter is generated and sent out.  If a potential enrollee tries to conceal having pre-existing health conditions on their enrollment form, they will be found out and prosecuted for committing fraud.  Disclosure is on the last page of the normally 8 to 12 page enrollment form before the potential enrollee’s signature line.

We are not “making America great again” whatsoever by allowing health insurance companies to go back to the days when having pre-existing health conditions were used as a reason to reject potential enrollees from access to having health insurance and branded them being “uninsurable”.   Now, isn’t that an undeniably deplorable practice on the part of health insurance companies?~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Sharing a link published online on November 5, 2018 to an abbreviated version of my post here that appears on Cleveland.com. 

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“No Quality of Life” — It can Happen to Anyone.

The Title :

“No quality of life:’ Halifax woman with rare disease paying $60,000 for U.S. surgery”

Please read this story if you have read that you have “Tarlov Cysts” on your MRI report, and your back pain is worsening.  You admit that you are noticing such things happening to you such as the fact that you cannot sit for long periods without feeling like you are sitting on a rock.  It hurts to bend down, twist, stretch, or lift even a half-gallon of milk. 

It is not likely you will find ANY doctor in NE Ohio, or indeed in the entire state of Ohio, who will explain to you what it means to have symptomatic Tarlov Cysts.  But, they will tell you that they do not operate on them.  

Please join several Tarlov Cyst Facebook Groups and read the posts and ask questions – and lots of them!  You will receive a more well-rounded education from other members who are willing to share their journey, and who also suffer from this debilitating disease.  

I personally feel that any Tarlov Cysts are like ticking time bombs in our bodies even if they do not initially present with pain.  Having one fall or being in one auto accident can change it all for a person. 

Please be your own advocate no matter where you live.  The doctors may turn away from you, but those who are also suffering from this horrid chronic pain disease will not.

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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.”
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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