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

 

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