“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.

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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.

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.  

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

Tarlov Cyst Disease — Here is an introduction

Below are some of my ‘random’ notes that I am collecting on Tarlov Cyst Disease; which is considered a rare disease.

 If you suffer from back pain and undergo an MRI of the Lumbar spine, or anywhere on your spine, and the radiological report mentions “Tarlov Cyst(s)” — please do yourself a favor and insist on the report being revised to show the number of cysts, their location, and their size. It is rare that all of that information is provided.  But, the doctor can request it to be included from the radiologist.  

Make sure you have multiple copies of the written report. Also obtain the CD of images of the MRI — I always try to do that anyway (even before the written radiology report is completed)–  before I leave a facility because they may be able to make one in a few minutes and it is worth the wait.  Do this whether your pain is mild or severe.  Most doctors will tell you what I have been told; that Tarlov Cysts are “incidental findings” and that they ‘rarely’ cause pain.  

Yes, you can have Tarlov Cysts in the nerve roots of your spine for a long time and not feel pain, but if you experience trauma in some way such as through a fall or from a vehicle accident, that could all change quickly, and it is a disease that does not go away on its own; in fact it is progressive.  

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Below is a reply I received after an on-line ‘chat session’ on back pain through the Cleveland Clinic.  I explained everything I knew about my own 7 Tarlov Cysts.

Sharing the written response I received from Dr. Michael Steinmetz of the Cleveland Clinic….truly all textbook!  Words that are short but not so sweet, I’m afraid.: 

Michael_Steinmetz,_MD:

“Tarlov cysts rarely cause symptoms and, hence, very few if any surgeons operate on them. They are present during development and, hence, are not pathologic and do not cause symptoms. They are commonly seen on normal MRI.  It is the majority thought process that they are incidental findings and there is another cause of the pain or symptoms.”

Dr. Michael Steinmetz is a physician whom one would think would at least “lean toward” accepting Tarlov Cysts as a disease that can cause pain for people in certain situations; and for whom would require meaningful treatment. which means surgery that can provide long-term relief from debiliating pain.  Treatment other than aspirations or nerve blocks which are proven not to work or are quite short-term, and can actually make a patient feel worse.  Aspirations are not permanent solutions.  

Here is a link to his Cleveland Clinic Bio Page with his information:

http://my.clevelandclinic.org/staff…/staff_displaY…

All these conditions are listed for Dr. Michael Steinmetz, but NO Tarlov Cysts!! 

Treatment & Services
Cerebral Aneurysm Clipping
Cervical Artificial Disc Replacement Surgery
Cervical Deformity Surgery
Cervical Spine Surgery
Complex Spinal Instrumentation
Complex Spinal Reconstruction
Complex Spinal Surgery
Deformity Correction
Fracture Care
Image-Guided Spinal Navigation
Kyphoplasty
Lumbar Fusion
Lumbar Spine Surgery
Management of Back and Neck Pain
Medical Management Of Spinal Disorders
Microsurgical and Minimally Invasive Techniques
Minimally Invasive Spine Surgery
Minimally Invasive Surgery
Neck Surgery
Nerve Transfers For Injury/tumor
Neurological Surgery
Peripheral Nerve Decompression/transfer
Rehabilitation Services
Revision Cervical Spine Surgery
Scoliosis Surgery
Spinal Deformity Surgery
Spinal Fusion
Spinal Surgery
Spine Biomechanics
Spine Decompression
Spine Reconstruction
Spine Tumor Removal And Reconstruction
Surgery For Spinal Tumors
Surgery For Spinal Vascular Malformations
Thoracic Spine Surgery
Specialty in Diseases and Conditions
Aneurysm, Cerebral
Arachnoid Cysts
Back Disorders
Brain Aneurysms and Hemorrhage
Brain Hemorrhage
Carotid Bruit
Cervical Infections
Cervical Myelopathy
Cervical Tumors
Chiari Malformation
Chronic Back Pain
Complex Spinal Disorders
Degenerative Spine Disease
Failed Back Surgery Syndrome
Herniated Disc
Infection of the Spine
Kyphosis
Lumbar Radiculopathy
Marfan Syndrome
Neck Pain
Neurofibromatosis
Peripheral Nerve Disorders
Post-Laminectomy Syndrome
Radiculopathy
Schwannoma
Sciatica
Spinal Cancer
Spinal Cord Injury
Spinal Deformity
Spinal Disorders
Spinal Fractures
Spinal Metastases
Spinal Neoplasms
Spinal Vascular Disorders
Spine Pain
Spine Tumors
Spondylitis
Spondylolisthesis
Spondylolysis
Spondylosis
Stenosis – Spinal
Vertebral Compression Fracture

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****Be educated as much as you can; be your own advocate!!****

Some References Regarding Tarlov Cyst Disease:

Facebook Groups for Tarlov Cyst support:

https://www.facebook.com/groups/trlovcystsupport/

https://www.facebook.com/groups/TarlovCysters/

https://www.facebook.com/groups/LIFEAFTERTARLOVCYSTSURGERY/

https://www.facebook.com/groups/816560101767067/

https://www.facebook.com/groups/Tarlovcyst/

https://www.facebook.com/groups/157071409314/

  1. S. Department of Health & Human Services – NIH – National Center for Advancing Translational Services – GAR Genetic and Rare Diseases:

https://rarediseases.info.nih.gov/gard/9258/tarlov-cysts/resources/1

Tarlov Cyst Images – June 9 2016

http://www.tarlovcystfoundation.org/tarlov_cyst_information0.aspx

https://clinicaltrials.gov/ct2/show/NCT02595190?term=Tarlov&rank=1