There is a small community of people about 5-9 percent of the population who are dealing with this rare disease called Tarlov cyst disease. There isn’t a lot of research being done in fact I only found about three good reliable websites with some good information on them. (I will list them below) There are forums were hundreds of people from all over the world are dealing with this, unbearable and difficult disease. Just like any other disease the symptoms vary depending on size, location, and person. A list of my symptoms are Upper muscle spasms, lower back pain, hip and joint pain, tenderness in sacral area (buttock area) , numbness and tingling in leg, bowel and bladder dysfunction, Cannot sit, stand or walk.
Here is a common problem that most people who have symptoms from their Tarlov cyst have run into. There is not very many studies or research, In fact it is my believe that this disease is not taken as seriously as it should be taken. When I first got diagnosed my doctor said he had no idea what it was and looked it up on the computer in front of me. He said surgery will take care of it no problem. I researched it and found surgery is very risky. Let me read some of the risk factors involved with this surgery: loss of function in bowel, bladder, legs, sexual organs, and or permanent nerve damage. Not to mention that the surgery could make symptoms worse.
The second doctor said that the Tarlov cyst isn’t causing my problems but couldn’t say really what it was so he pawned me off on a pain management office.
The last doctor told me to suck it up. I am just going to have to figure out a way to deal with my pain. Their big thing is that peoples mind are unbalanced because of all the pain medication and their method of fixing my pain is counseling and gradually taking me off my pain medications. So far this has not worked.
The Tarlov cyst Disease isn’t an important enough disease to get national attention and support, but it’s just big enough to ruin peoples life and leaves us alone and helpless. The Tarlov Cyst Association answers the question Are Tarlov cysts a type of cancer? Here’s what they say:
Tarlov cysts are not cancer. Symptomatic Tarlov cysts are morbid enlargements that continue to grow, which, according to historical usage, qualifies them to be classed as tumors; however, Tarlov cysts grow from the pressure of spinal fluid within them, not through abnormal cell division. So Tarlov cysts are not neoplasms or cancer.
Like cancer, however, Tarlov cysts can cause severe debilitating pain and can also damage distant organs; Tarlov cysts do this by affecting the flow of nerve energy and the pressure of spinal fluid.
Like cancer, Tarlov cysts can cause intractable pain and can lead to severe depression and suicidal behavior. Unlike cancer, symptomatic Tarlov cysts are rarely diagnosed. There is no medical "industry" in the diagnosis and treatment of Tarlov disease.
Tarlov disease can advance to the stage of constant excruciating pain. If not successfully treated, a person in this stage of the disease can die from the stress of the suffering, from the pain medications, or from suicide. Although Tarlov disease is not a form of cancer, it should be should be taken with as much seriousness by doctors, patients and their families.
The most important word in their reading is “Seriously” We are defiantly not taken seriously. Are we not important? I feel as if I will die because of this disease. I have always felt I was put on this earth for a reason not yet shown to me. So if this is my reason than let my voice be heard. I am tired of being pushed around. I have a rare disease. I am in pain all the time. I am depressed. I need assistance. I need someone who is here for the greater good. I NEED HELPPPPPP!!! IS ANYONE LISTENING? Why is nothing being done about this?
Tarlov Cyst Links:
Tarlov Cyst Association
http://www.tarlovcyst.org/index.php?option=com_frontpage&Itemid=1
Tarlov Cyst Disease Foundation
http://www.tarlovcystfoundation.org/Home.asp
National Organization for Rare Disorders
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Tarlov%20Cysts
Have you thought that probably it is you that this illness needs? That you are the catalyst that will make things happen? Hope that this thought, this sense of purpose will help you hang in there.
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