Tarlov Cyst

[Catherine2020]

I was just told by my doctor. I have a Tarlov cyst on my spine. Anyone else have this ? Apparently it's rare and doesn't cause too much pain. But I'm in agony.

[kamals]

I have one 7mm on right S2 nerve root. They do cause pain if they get too large and compress on the nerve root. Which nerve root is yours on and how big is it? Mine is believed to be asymptomatic. Look up Dr. Frank Feigenbaum or the Tarlov Cyst Institute for more info.

[Catherine2020 in reply to kamals]

I'm not too sure on size. But not touching my nerve apparently. TBH I was a bit shocked so didn't take in much of what she said. I will be going to see her next week for more information. I will look the doctor up.

Thank you.

[kamals in reply to Catherine2020]

Tarlov cysts appear on the exiting region of nerve roots on the sacrum mostly, S1 to S5 but they can appear anywhere on the spine. If it's not on the nerve root then it may not be a Tarlov Cyst. They appear like balloons on MRI images. Who diagnosed it? Are you certain you have a Tarlov cyst? And the pain must coincide with the area innervated by that specific nerve.

[Catherine2020 in reply to kamals]

I had an MRI done on my whole back and the results had come back as tarlov nerve. I could be wrong about not being on the nerve root. I really didn't take much info in as I was a little confused and asked to come in and speak with her regarding this. So if it's not on the nerve root it can't be a tarlov cyst? My symptoms that I've been having for so long really line up with this diagnosis as well.

[kamals in reply to Catherine2020]

I would ask the location and size of the cyst. Bigger cysts are full of cerebrospinal fluid (CSF), which causes them to push on the nerve root and that's what causes your symptoms. Different nerves serve different parts of the body so you need to understand which nerve root this cyst is on and at that point you can look up the function of that specific nerve to see if the symptoms align. For example, if your cyst is on s2 and your pain is in the shoulder, the cysts isn't your problem because s2 nerve doesn't supply sensation to the shoulder. Anyway, you get the point.

[Catherine2020 in reply to kamals]

That's very helpful. More helpful then my doctor for sure. Thank you.

[kamals in reply to Catherine2020]

You're welcome. And best of luck.

[Dswear in reply to Catherine2020]

Tarlov cysts are on your nerve. If you haven't already found this website, please take a look. I have multiple on the spine including the sacrum.

You should get all of the answers that you need. Best wishes to you.

Tarlov Cysts Foundation

[jacquieb Volunteer]

Hi, I can contribute to this post. I have pudendal nerve pain since having a routine smear 12 years go. I too have tarlov cysts that have eroded my sacrum bone and sit in S2/S3. When I was told I had these cysts I thought, " at last, the reason for my pain"! Sadly I was told that wasn't the case, but got in touch with Dr F in the States anyway. I did a lot of research and spoke with Dr F, but he was a little vague and didn't quite get the pudendal nerve thing. The surgery cost was sky high, but this was subsequently reduced a few weeks afterwards. I didn't go down that route. I also went to see Adrian Casey at the Wellington in London. The surgery sounded awful, as well as afterwards so again passed. So I still have them, and it looks like they are going to stay. Just to add a spanner to the works I have since found out that I have a condition called Ehlers Danlos hypermobility 3. A connective tissue disease. This means that I am very flexible, always good at sports at school. My skin is quite stretchy, hence ovarian cysts, stretch marks, as well as bunions, flat feet, and TMJ. This might be the reason why I have the TC's too? That's just the start, its a minefield, but you have to keep going.