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

August 2, 2016 Update from Sheep Pen Cemetery: William Irwin, Sr.’s Grave Marker Restored and Reset in Its Original Stone Base

At rural Sheep Pen Cemetery there is a rather plain looking white marble tablet gravestone that was left to lean against a large slow sinking table top slab that holds the marker made for Maria Dick.  This scene had been undisturbed for years that sadly turned into decades, that is until now.  


In 1858, the flat topped gravestone was carved and installed to mark the final resting place of William R. Irwin, Sr. who came to America from Ireland in 1798.  His life story was well written up in the book:  “History of Ross and Highland Counties, Ohio.”  

William and his wife, Margaret McCormick Irwin, were the parents of 11 children; 10 of whom lived to adulthood.  The children lived out their lives and made their own mark in their community and for some, far beyond it. 

William and Margaret Irwin are an example of how couples (like countless others who rest in peace at so many of Ohio’s early burial grounds that have now been deemed to be inactive or even abandoned) whose children became builders in their communities through service as teachers, doctors, lawyers, shopkeepers, and farmers – and at professions no longer in existence.  

Thankfully, through biographical information and drawings published in 1880s era county history books, (and Ohio has several of them!), we are privileged to learn more details of the generations of ancestors, who during their lifetimes, fulfilled the dreams of their pioneer parents.  

Living descendants may not always be aware of the stories of the lives led by their great or great-great grandparents who are now buried in grave sites with sunken or unreadable gravestones.

However, there is renewed hope because of a resurgent interest to restore, and in some cases even unearth, gravestones at cemeteries like Sheep Pen. 

The interest has become a concerted effort through volunteers working independently and in like-minded groups.  

Thus, I would like to thank the dedicated group of volunteers of the Greenfield Historical Society !  Since 2014 they have worked together to clean, repair, straighten up, and reset markers, like those of William Irwin, Sr.,  at the Old Burying Ground in Greenfield.  They have inspired new folks who desire to learn and participate to come and join them. 

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Extending my personal thanks to Scott and Venus Andersen for their immeasurable contributions at Sheep Pen Cemetery to make it the cemetery it is today.  They have also volunteered and contributed regularly at the Old Burying Ground since the work sessions began.  

Thanking also John King of the Greenfield Historical Society who has done so much of the physical digging work that has led to discoveries of bases, and fragments of gravestones that were needed to make one whole again.  All this work that has become the remaking of a cemetery is indeed utterly remarkable!  Everyone who contributes is appreciated!  

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It is my pleasure to share Scott Andersen’s three photographs’s below of the William Irwin, Sr. gravestone, before, during, and after it was put back where it belongs at Sheep Pen Cemetery.: