Health Organization for Pudendal Education

Her Majesty,

I have bilateral perineural root sleeve cysts on s1 or s2. (8 mm., 7 mm) I have been told,they are not contributing to my symptoms or pain. I read they are usually over 1 cm when they start to be troublesome. I also have some on thoracic spine level that were fluid filled not solid.

How can one tell if they are symptomatic and aren't they difficult if not impossible to remove? Where is the pain from them
And what does it feel like.


Any clarification would be helpful.

Thank you. Dakota

Hello. Thanks for sharing your story. I’m sorry to hear about all of the pain that you’ve been experiencing. I will ask my physician about the test that you recommended.

Hi Dakota,

If you haven't already, please visit the Tarlov Cyst Disease Foundations website:

http://www.tarlovcystfoundation.org/tar ... tion0.aspx

DakotaGirl wrote:I have bilateral perineural root sleeve cysts on s1 or s2. (8 mm., 7 mm) I have been told,they are not contributing to my symptoms or pain.

As HerMajesty has explained, it's very difficult getting support or acknowledgement from the medical community in regards to TC's. After many battles and struggles, I also had surgery for TCD this past April.

I'm hoping after reading the etiology and symptoms that things are a little more clarified for you.

Kind regards,
Karyn

Disagree about the size. I was very symptomatic at 1.2cm right side and 8mm left side, S2. This is possible in the sacrum because the sacral canal is very narrow, and so nerve root compression does not require something large. This link will bring you to a page where in one of the posts I shared screen shots from my MRI, which should give some clarity about what an 8mm cysts looks like within the sacral canal: http://www.pudendalhope.info/forum/view ... t&start=30
I agree with Karyn about going to the Tarlov Cyst Disease Foundation website, because there is a VERY SMALL list of providers on there, who are docs who will not give you the blow off. I participate in some Facebook groups regarding Tarlov Cyst disease, and one of them has a document gives a longer lists of physicians. PM me if I you need that list, so I will get the alert - I do not come on here to check posts much.