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


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 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.”
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.

Group helps restore oldest section of Uhrichsville’s Union Cemetery

UHRICHSVILLE A dedicated professional genealogist and the staff at Union Cemetery have teamed up to restore the oldest portion of the cemetery, where many of the city’s pioneers are buried.There are 408 known burials on what is known as Old Hill, including two War of 1812 veterans and members of Uhrichsville’s first settlers, including the Uhrich, Cahill and Haskins families. The graves date from 1837 to the mid-1890s.But the area has fallen into neglect.Over the past century and a half, most

Source: Group helps restore oldest section of Uhrichsville’s Union Cemetery

Ohio Attorney General’s office sues cemeteries over undelivered services

The Ohio Attorney General’s office has sued two Ohio cemeteries, including one in Lewis Center, for failing to deliver headstones and other memorial items to consumers who paid for them.

Source: Ohio Attorney General’s office sues cemeteries over undelivered services

The Long Journey of a Tarlov Cyst Disease Patient Following Surgery

****Sharing a new Blog Post from “Tarlov Cyst Disease“****

I feel that the medical community, in general, has turned their backs on those who suffer the debilitating effects of this rare disease commonly known as Tarlov Cyst Disease.  The disease can linger in a person’s body almost undetected for years, however, due to circumstances coming from trauma such as falls and vehicle accidents, Tarlov Cysts become more and more painful.  One of the hallmarks of this disease is the feeling like the sufferer is “sitting on a rock.”  Those of us who belong to multiple Facebook Groups devoted to this rare disease read about it quite often by both young and old alike.  Yes, the disease primarily strikes women, but it can happen to men as well.  

Please know that needles in the spine treatments such as nerve blocks and aspirations can do more harm than good and that harm they cause can be permanent.  

The progressive march of Tarlov Cyst Disease is relentless robbing the affected person’s life of mobility through chronic deep pain that is persistent; and even all reason for them to hold out hope for a cure because doctors offer nothing that can reverse the progression of pain; and the doctors  don’t seem to care about the patient’s condition being as painful as it is.  

Medications and physical therapy are band-aids at best when stacked up against Tarlov Cyst Disease.  

Praying for the day in America and around the world when Tarlov Cyst Disease will be better understood by those in the medical profession, that more clinical trials to prevent or cure this disease will take place.  The numbers of people are growing who suffer from Tarlov Cyst Disease.  I see it in the six different Tarlov Cyst Disease Facebook Groups I belong to.  We know we are not alone, yet we still feel so alone.