Well I never....Tarlov Cysts,Ovarian Cysts, Inflammation, Pain.

[jacquieb]

Thought I would let you know that the MRI on my lumbar and pelvis last week came back showing:-

Two largish 2cm Tarlov Cysts and a

One Ovarian Cyst 6x4cm.- knew about this one.

Any thoughts on this one? Is this what is causing my burning pain and of course the endless years I have endured in suffering from this wretched nerve pain.? The TC are located in the sacral region.

lol

j

x

[helenlegs11 Volunteer]

Yes Jacquie, I have heard of someone who has been diagnosed with Tarlov Cysts and suffers from nerve pain.

She is is trying to work out if they are the cause of it or a piriformis problem and is waiting for a piriformis botox shot to try and get to the bottom (no pun :)) of it as that is the least invasive treatment to go for first.

What do they say from the report from the MRI?..

[Revsma]

I have tarlov cysts on the end of my spine, on the tailbone. I can't recall the size but neurologist kept saying they didn't affect anything, so did the radiologist. Maybe they're not that large, but they could be wrapping around or pressing on something. I've had a lot of tumors and growths, I'm not some dumb kid that doesn't know better. I actually go numb from knee to knee (like an upside down U) and that's frightening because I know about myasenthia gravis, too.

I keep running to the GP for a urine test because I think it's an infection, same with the gynecologist. Nothing there but boy, do I HURT! Pain and burning, it's really miserable. What kind of tests or treatments has anyone had for this??

[skolah]

Hi there,

I have 3 Tarlov's (perineural) Cysts in my sacrum. 2 years ago one was the size of a large tangerine. I'm waiting for a new scan to see if it has grown. as you probably know, the cysts are formed between the membrane around the roots of the nerves at the base of the spinal cord and the nerve itself. As they grow, they do impinge on other structures and nerves - this is what causes the pain and other problems. They can grow anywhere in the spine but are usually seen in the sacrum. If they become large enough, they can erode the sacral bone and cause it to remodel, which in turn can cause other issues. If a doctor ever insists that they are asymptomatic and don't cause pain, you can be certain that they are wrong, and with the utmost confidence, you can tell them they are wrong!

Surgery to treat them in the UK is not often carried out. However it is far more common in America and some European countries. Unfortunately, pot-operative results vary with some people being relieved permanently (this is rare), others for weeks and some up to a year. There doesn't seem to be a massive body of conclusive evidence suggesting that there is one best way of treating Tarlov's, or that surgical intervention (even needle aspiration to drain the cerebral spinal fluid from them - they can refill within hours) is the best direction in which to go.

Here are some links you may like to try. If you've searched about these cysts, you have probably seen these sites already:

tarlovcyst.org/

login.npwebsiteservices.com...

I wish you all the best and hope you're not having too much trouble with these 'little' blighters! (little? Mine are practically a third of the width of my sacrum!)

Skol

[jacquieb Volunteer]

Hi Skol

Since my post way back in September I have a lot of advice and information about TC's and have joined a couple of forums where i have found out some interesting facts. I have even spoke with a Dr F as he is known in the States, where so many mainly American's have them wrapped and injected with ones own body fat. I was offered surgery but declined as many people who have TC's don't all have PNE issues, and the ones who do, don't seem to get such good results, my views. Of course once you have got rid of the cause, the treatment offered for people like me, sometimes get better, PT for example. My TC's have eroded my sacral bone, not sure what other problems than arise, but I am now suffering from IC and Diveticulitis, so its basically getting worse.

What are your symptoms, how long have you had them and presume they have not been removed? Tangerine, that must be about 4cm?