Pelvic Pain Support Network
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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 I contacted the Tarlov cysts foundation whom told me that this diagnosis was out of date and very wrong.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

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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

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Hello.

I have recently been diagnosed with a tarlov cyst in the sacram bone and my gp had never heard of this before so is ringing me next week. I'm a little scared to be honest. Can you offer any advice please?

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I think I was incredibly lucky when I eventually found my consultant neurosurgeon in the West Midlands. Did your gp get back to you? Was she helpful? Are you having any symptoms? It's only natural that you feel scared, especially as people around you don't know anything about it. Just remember that you can always talk to me. I've been diagnosed with this condition since 2010 x

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Hi there thank you for replying. My gp has referred me to spinal specialists, goodness knows how long I'll have to wait.

I really struggle walking any longer than 15 mins before the pain sets in. My nerve pain meds have been increased at night so I'm hoping that will help.

I'm feeling quite alone with this to be truthful.

Have you had any treatment?

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I can understand how lonely you feel when people around you haven't got a clue what you're dealing with. However, feel free to talk to me whenever you want to. I've had 3 lots of surgeries so far along with a never ending supply of medication. I'm currently seeing a pain clinic consultant and having physio to try and strengthen my weaker side. I struggle to walk for more than 20 steps or so. It's all incredibly frustrating and I'm forever chopping and changing my meds.

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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.

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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.

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

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Hi Holly

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

Regards

Sierra

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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.

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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

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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.

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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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Hello I have just been diagnosed with Tarlov cyst in my sacrum bone and I'm a little scared as cannot see any nhs guide lines about this. Can you help please?

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The NHS don't seem to be touching the word Tarlov

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Only just found this site whilst researching my husband's ongoing medical issues.

Something just doesn't seem to add up to be honest, so I decided to look into the cysts a bit more.

My Husband has two fairly large cysts. Doctors have bounded around the terms Tarlov and Arachnoid for these. One of them is around the L3 area of his spine and the other in the base of his brain.

The cyst in his spine is through a vertebrae and in the past, he has had lumbar spine injections that we have been told could have interfered with the Cyst.

The spinal cyst was noticed after and MRI from an accident when he was a young teen but we have been told they should be causing no issues.

The problem is that when you look at the Symptom list - He ticks the boxes almost perfectly and the more we see, the more convinced we are becoming that this is causing some of his medical problems. My husband is an incredible carpenter and his current pain and mobility levels mean that he isn't able to work at the moment.

He's been prescribed a cocktail of opiods over the years but for the most part, they do not handle the pain.

We really want to get to know more about these cysts but the NHS doesn't seem to want to acknowledge them too much and seems to steer clear from our own experience. We've been told they can't cause pain, which from what I've been reading doesn't seem to be what many others are saying.

Any advice anybody could give about the right people to talk to, things that might help in the mean time or useful sites for learning would be great, as we really just want to get things to a more manageable level for him.

Thank you <3

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Hi, I have three Tarlov Cysts and mine are very painful and making me feel numb. Doctors have just ignored mine for years. After years of asking to see a specialist I can see one now, but not yet sure who to see for best. I am not sure if I could have lateral chiari also, because to me my scan looks like this. I do not think much is known about Tarlov Cysts in the U.K.

Wishing everyone that has these cysts all the best.

Suzie

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