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.
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One thought on “Still Researching for More Hope for Tarlov Cyst Pain Relief

  1. As someone who also lives with Tarlovs I also feel the frustration of finding a doctor who “believes”. I blog just to hope some doctor will get a bug in his/her drawers and read.

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