Research Tarlov Cysts because most Doctors, Radiologists and Neurosurgeons do not understand them.

Mar 19, 2016

By: Holly


I had a fabulous career as an International Makeup and hair artist plus a Fashion stylist/ food stylist / still life stylist. My job involed driving up and down the country and flying around the world. The job involved carrying heavy equipment and walking long distences as well as standing all day. I loved my career and was actively trying to improve my health by going to the gym 3 times a week for heavy cardio and weight training. In August 2013, I was working in a photography studio for a large catalogue shopping company for 5 days a week, sometimes working weekends also. This company had recently moved to an new industrial park building that had a number of issues, such as leaking and dangerous health and safety concerns. One such concern were the metal stairs that led to the entrence of the building, which had no grip and only painted with paint. This meant that the stairs were slippery and care was taken by all but accidents did happen with other colleagues. I was going home on Friday 2nd August, when it had been raining and I said to the woman in front "Be careful on these steps, they are slippery when wet." Ofcourse it was me that slipped down the stairs, falling on my coccyx with breaking my right wrist. I was instantly in pain in my back but my wrist being broken took over the pain level. I assumed I had bruised my coccyx or pulled the muscles in my back and the nurses at the hospital agreed. The week following the pain in my back was growing and not getting better, in fact the pain was getting unbearable. I asked for an MRI because I was concerned that the pain was something serious. The pain medication that was given was increasing and nothing was touching it. The results arrived and I was told that there was an abnomally on my sacrum and would be sent to a Neurosurgeon. I knew it was something that was cuased by the fall, due to the fact I had a trapped nerve I had in 2012. During that year I had an MRI to check nothing else was the cuase and so I had an MRI before the fall in August 2013 and after to compare. The MRI before the fall in August 2013 showed nothing on my scans but following the fall, it showed the Tarlov cysts. I went to see a Neurosurgeon and he diagnosed for certain Tarlov cysts on my sacrum but then followed up with the statement that Tarlov cysts are NOT symptomatic. Since I could not disagree with him without any understandling of the condition, I left in tears feeling that the pain I was in was without answers. A years later , unable to work and registered diabled and no better in my condition with symptoms such as : 

Persistent genital arousal syndrome
Vulvodynia sharp needle stabbing pain : rectum, vagina opening, vulva
Sciatica back of leg makes me cry out when bad 
Right leg pain down to ankle foot/ tingling down one side foot 
Weight on foot Sends shooting pains up leg sciatic pain / weakness
Urine retention/ unable to fully release / urine down leg or pants
Constipation /unable to bare down /enema 
Pressure pulling pain discomfort in sacrum / bending worse 
Hurts to sit can't get comfortable as discomfort increases 
Cocyx pillow or best to lie on side
Press area hurts sharp cry out pain
Loss of balance like vertigo / dizzy when standing from sitting
Migraines headaches on right side behind eye / blurred vision 
Cannot stand or walk for more than 5 minutes 
Numbness perinium

I was unable to work in my beloved career and started to look into this illusive condition mentioned by dismissed by the Neurosurgeon called Tarlov Cysts. When I researched the condition I realised that all my symptoms were those of the Tarlov cysts on the scaral area. There were sites and groups dedicated to the suffering of those who had been dismissed by doctors around the world. Facebook was the final revaltaion with groups full of individuals with the same condition but filled with a wealth of information and support along with guides. I learnt more by joining the facebook groups and learning from others about Tarlov cysts than the years of trying to learn solo. I am now at the point that it will be nearly 3 years of pain and suffering. I had another MRI in February 2016 and have sent the scans down to Mr Adrian Casey in london Royal National Orthopedic hospital. I am hoping to see hm for a second opinion and to finally get treatement of a result for the pain I have been in. The lesson is to research the conditions you are diagnosed with extensively straight away. What I learnt was that the original Neurosurgeon in Augusy 2013 who diagnosed the Tarlov cysts but dismissed the pain by saying that they are no generally symptomatic, that he was gravely incorrect. That neurosurgeon in 2013 was going off out of date understanding of the condition that was later contradicted, due to the number of people who presented with symptoms. That Neurosurgeon who diagnosed me was wrong and out of date, Tarlov cysts can by symptomatic and for me are very much debilitating. Due to that neurosurgeon, my pain and symptoms were ignored when I applied for disability PIP because the report by that Neurosurgeon and therefore I was denied the higher rate of disability and only given the standard. I am hoping to finally get answers and treatment one day. 

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