Tarlov cysts sacrum

I have Tarlov Cysts base of my spine from falling down a flight of metal stair.

I cannot sit in a chair for long, stand for more than 5 minutes. I have pain down my leg that makes me cry out. Weakness in my right leg and I lose equilibrium often staggering which means at 32 years, I walk with a cane. Pressure on the area makes me yowl in pain. Plus other lovely symptoms.

After two years I was finally given disability PIP however it has affected me in many ways.

I was told by the consultant who informed me of the Tarlov Cysts, that they do not cause much problems. I contacted the Tarlov cysts foundation whom told me that this diagnosis was out of date and very wrong.

I need to find a Doctor / consultant who knows about Tarlov Cysts.

I want to have a consultation with someone who understands and can offer some ideas for getting better.

Does anyone know of Doctors in the North of England who specialize in Tarlov cyst understanding, or if not someone in the UK ?

tarlovcyst.co.uk/m.index.html

9 Replies

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  • Hi Holly, I too have Tarlov Cysts in the Sacrum, S2/S3 which have eroded my sacrum. To be honest there arn't many consultants who believe that TC's are symptomatic. I cant help but wonder if there is something else going on to cause such pain. I know that TC's sit in nerve roots, but the pain you are experiencing sound more muscle related or some sort of fracture. Tarlov cysts can sit around for years, you may have had them before your fall? I have had a lot of experience with consultants in the London and in the US if you are interested in hearing more. jx

  • Have you considered that your coccyx may have been fractured or badly bruised in the fall you had?

    Have you had any X-rays or an experienced physiotherapist examination to check this out?

    My coccyx is out of alignment ( diagnosed by a physo). so I do understand the painful sitting.

  • I had an MRI focussed on that area. I have had MRI scans before because of cluneal nerve which showed perfectly healthy spine , no facet or degrading of disks. That is how my consultant knew I had cluneal nerve.

    After my fall the pain and physical disabilities became 10x worse so was sent for a MRI but this time Tarlov Cysts had formed following the fall. No other fracture or problem present.

    If you go into any sites regarding research on Tarlov Cysts it says that if a consultant believes they are not symptoms causing, then they are out of date as the large number of medical evidence to the contrary. Even Tarlov himself changed his opinion following evidence..All my symptoms are typically Tarlov Cysts.

    If anyone knows of a consultant.who knows Tarlov Cysts. Then please share.

  • Yes the best Dr is in Dallas Texas there is a closed Facebook group for tarlov cysts please join it

  • Hi Holly

    Mr Adrian Casey at the National hospital for Neurology and Neurosurgery London has some expertise in this condition.

    Regards

    Sierra

  • I have Tarlov Cysts at S2-have only discovered website from reply below.Seems I have not been given accurate info on what they actually are! Only treatment in this country I have been offered was sacral decompression which others have advised against ,Most pain treatments dont work. Am down to the last resort pain treatment now. Would welcome the names of any Tarlov experts in the UK.

  • I have degenerative disc disease , a 2.5 cm tarlov cyst in the mid sacrum and now a herniated disc that is compressing my central nerve root :( I was referred to Adrian Casey but he hasn't taken me on ( not sure why ) I'm literally so fed !

    My loca consultant just says they don't cause pain but quite clearly they do !

    Would also love to hear from anyone who can recommend a consultant in the UK x

  • Adrian Casey offered me surgery on my TC's but I didn't go ahead, nor did I go ahead with the famous Dr Frank Feinenburg in Dallas. Its massive surgery and still in its infancy. So tread carefully.

  • Hi jacquieb , did you go private to see Mr Adrian Casey in London or was he also on the NHS ? Did you have to have a new set scans done if private or was he able to see the NHS scans MRI ?

    I have had scans done under NHS that shows the Tarlov cyst. My worry to go see Adrian Casey private, is having to pay for, more scans. Last time I paid private at the Spire, MRI cost over £1,500.

    As I understand treatment, they drain the cysts of fluid, then use a glue or resin to prevent the cysts from filling again.

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